Ordinary
lives
Disabled children and their families
A guide for donors and funders
June 2005
Cathy Langerman
Eve Worrall
Ordinary
lives
Disabled children and their families
A guide for donors and funders
This report has been supported by The True Colours Trust.
Cover photo supplied by Contact a Family.
Executive
summary
The need
Role of the public sector
There are an estimated 700,000
disabled children in the UK (5% of all
children). Disabled children have the
same needs as other children: to learn,
have fun, make friends, play and go on
holiday. However, they face many barriers
that prevent them from doing these
things, leading to loneliness and
frustration. Many disabled children do not
get the equipment, therapy or
communication aids they require. This
can slow their development and limit their
capacity to take part in everyday
activities.
The government plays the primary role
in providing financial support and
services for disabled children and their
families. However, benefits and services
have too many exclusionary criteria
attached and are not reaching enough
families. Recently, central government has
shown an increased commitment to
supporting disabled children. Given the
lack of funding and the increasing degree
of local autonomy, this is not translating to
local provision. The government should
expand the benefits system and ensure
local implementation of the various acts
and initiatives it has trumpeted.
Almost all disabled children live at
home where they are valued and
loved. Unfortunately, their families are
more likely to live in poverty and have
high levels of debt. This is because the
cost of raising a disabled child is three
times greater than for a non-disabled
child, and parents are often unable to
work because of intense care
requirements. Most families do not
receive any breaks from this care.
Furthermore, nearly three quarters of
families with a disabled child live in
unsuitable housing. In addition to the
practical difficulties, families often
experience emotional devastation, anxiety
and loneliness.
Role of the charitable sector
Given the government’s responsibility,
the role of charities might appear less
obvious; however, it is no less
important. Charities are often the first
port of call for families. They provide
emotional support, information and help
in navigating and accessing the range of
available services and benefits. As
providers of services such as short
breaks, and leisure and arts projects,
charities often use voluntary donations to
experiment with new approaches, which
are then rolled out with statutory funding.
Charities also inform service providers
around the country about changes to
legislation, new approaches and activities.
Most importantly, they lobby the
government and support disabled
children and their families to lobby for
themselves.
Recommendations for
donors and funders
NPC has found a broad range of
charities that are carrying out these
roles effectively. Donors and funders
can support such charities, and be
instrumental in improving the quality of life
for disabled children and their families.
NPC recommends funding a range of
charities – from those that support
children and families directly, to strategic,
national organisations that influence policy
and society.
Funders interested in supporting work
with disabled children and their families
are encouraged to contact NPC for
detailed reports on a wide range of
exciting opportunities.
Disabled children
and their families
are often
condemned to
a life of poverty,
loneliness and
sub-standard
services.
1
Born Yesterday
Tightly-folded bud,
I have wished you something
None of the others would:
Not the usual stuff
About being beautiful,
Or running off a spring
Of innocence and love –
They will all wish you that,
And should it prove possible,
Well, you’re a lucky girl.
But if it shouldn’t, then
May you be ordinary;
Have, like other women,
An average of talents:
Not ugly, not good-looking,
Nothing uncustomary
To pull you off your balance,
That, unworkable itself,
Stops all the rest from working.
In fact, may you be dull –
If that is what a skilled,
Vigilant, flexible,
Unemphasised, enthralled
Catching of happiness is called.
Philip Larkin1
Contents
1
Executive summary
2
Contents
50 Section 3: Professionals and
policy-makers
50
Government context
4
Introduction
50
Legislation
4
The purpose of this report
51
National policy
4
Methodology
52
Local delivery
5
Scope and content
54
Charitable sector
5
Structure
54
Improving services
55
Advocacy
6
Background
6
Defining disabled children
57 Section 4: Society
7
Counting disabled children
57
The role of government
8
Types of impairment or condition
57
The role of the charitable sector
11
Prevalence and trends
59 Conclusion and recommendations
12
Ethnicity and disability
12
Poverty and disability
64 Appendices
13
Places of residence of disabled children
64
14
Section summary: data on disabled
children
Appendix 1: Summary table of data on
number of disabled children
65
Appendix 2: Relevant legislation
68
Appendix 3: Recent government initiatives
15 Section 1: Children
15
Children’s needs
15
Friendship, leisure and play
21
Holidays
21
Equipment, communication
and transport
25
28
74 Acknowledgements
76 References
Education
Section summary: children
29 Section 2: Families
29
Families with disabled children
30
Family needs
30
Financial support
39
Housing and adaptations
42
Short breaks
48
Emotional support
49
Section summary: families
3
Ordinary lives
Introduction
Introduction
The purpose of this report
This report is a guide for donors and funders interested in
supporting disabled children and their families. It contains the
information required to understand the issues and need in this
area. It addresses all donors, from private individuals, who may be
new to the subject, to grant-makers with extensive experience.
The report focuses on:
• The needs of disabled children and their families.
• Responses and activities by the government and charities.
• The results of these activities.
• Funding priorities.
NPC’s research highlights activities that are most likely to benefit
disabled children. This allows donors to target resources more
efficiently and to maximise impact. NPC can provide detailed
reports on specific organisations and assist in grant-making.
Methodology
There were three stages of research for this report: desk research,
national fieldwork and local fieldwork.
Desk research
NPC began its research by reviewing relevant legislation and
reports. This included government, policy and regulatory
documents, and academic papers and research undertaken by
some of the larger charities. NPC identified the major players
within the sector and approached them for its national fieldwork.
National fieldwork
For its national fieldwork, NPC interviewed 20 individuals from
relevant charities, umbrella bodies, central government
departments and academia. (For the full list see
Acknowledgements.)
The purpose of this was two-fold:
• To establish if, and how, the government and voluntary sector
are addressing the needs of disabled children and their families.
• To identify gaps and priority areas for intervention.
Because of the high number of charities in this sector
(approximately 300 national groups concerned with specific
conditions, and over 1,000 local parent groups)2 it was not
feasible to visit most of them. NPC selected national charities that
work with children with any type of disability and their families and
also some of the larger single-condition charities (e.g. Mencap,
Scope, and the National Autistic Society).
Local fieldwork
After developing a broad understanding of the sector, NPC
conducted two local case studies: in Liverpool and Tower
Hamlets. These areas were selected after considering a number
of criteria:
• Geography and population demographics.
• Type of local authority, i.e. Metropolitan, London Borough,
County or Unitary.
• Comprehensive Performance Assessment (CPA)* and star
ratings .
†
††
• Children’s Trust** and Children’s Fund status.
Liverpool and Tower Hamlets are deprived areas and have large
black and minority ethnic (BME) communities. Tower Hamlets
received a three star (the best) ranking from the Commission for
Social Care Inspection (CSCI). At present, it is implementing a
Children’s Trust aimed at joining up and improving services for all
children, specifically disabled children. Liverpool received only a
one star rating. It is not one of the Children’s Trust pathfinders,
but it does have a Children’s Fund.
NPC met with local experts, including children’s service managers
at the local authority and disabled children’s team members at the
Children’s Fund. It also visited numerous charities. The aim was to
build a picture of local service provision and identify areas of
unmet need.
Scope and content
Because of time limitations and different legal and political
frameworks in the various countries of the UK, this report only
covers England. However, most of the findings are applicable across
the UK and some of the charities cited provide UK-wide services.
The knowledge gained through its local research means NPC is
able to quickly identify and evaluate the effectiveness of local
charities in other areas.
The age limit for ‘children’ in this report is 18. However, this is not
always useful because different government departments have
different age cut-offs. For example, children’s health services end
at 18 whereas full-time education stops at 16 or 19. Statutory
requirements state that planning for the transition between child
and adult services should begin when children are age 14.
However, this report does not cover the subject of transition
because it is a large and arguably distinct research area. NPC
plans to cover the issues of transition in a future report.
* The Comprehensive Performance Assessment (CPA) process was introduced for single tier authorities and counties in 2002 and has become the overarching process
for central assessment of local authority performance.
†
Star ratings are issued annually by the Commission for Social Care Inspection (CSCI). They summarise CSCI’s independent judgements of performance across all social
care services.
** Children’s Trusts bring together health, education and social services within a single agency and are designed to enable multi-agency working.
††
4
The Children’s Fund is part of the government’s agenda to support disadvantaged children and young people, targeting 5–13 year olds (see Appendix 3).
Ordinary lives
Introduction
This report examines the emotional, social, physical and financial
needs of disabled children and their families. It does not cover
specific healthcare interventions or medical research. The issue of
Special Educational Needs (SEN) is covered in NPC’s report
Making Sense of SEN (2004); this report only briefly touches on
education. Palliative care for children is the subject of NPC’s
report Valuing short lives (2005).
Structure
The report begins by defining disabled children and reviewing the
quantitative data on them. The next four sections cover: children,
their families, professionals and policy-makers, and society (see
Figure 1).
Section 1 considers disabled children themselves. It looks at their
needs, and how these needs are, or are not, being met. It
examines and lists some of the charities that are addressing the
needs of disabled children.
Section 2 considers the families of disabled children. It looks at
their needs and the state of provision to meet them. It examines
and lists some of the charities that are addressing the needs of
these families.
Section 3 looks at how to improve the delivery of services at
national and local levels. It sets out the statutory framework for
service provision and the degree to which it is implemented. It
explores how voluntary donations can have a positive impact on
policy and delivery of services.
Section 4 considers what needs to be done to make society
more inclusive of disabled children and their families.
Finally, the conclusion summarises the case for private funding
and the best way to contribute to this sector. Detailed charity
recommendation reports are available from NPC.
NPC’s research
enables donors
to target
resources more
efficiently to
maximise
impact.
Child
Holidays • Education
Equipment • Leisure & play
Communications
Figure 1:
Report
structure
Family
Financial • Housing
Short breaks •
Emotional support
Professionals
& policy-makers
Training • Research •
Advocacy
Society
Media • Education •
Campaigning
5
Ordinary lives
Background
Background
Disability is the
interaction
between
impairment and
social, attitudinal,
economic or
physical barriers.
This section discusses models, definitions
and terminology of disability. It presents data
on disabled children in the UK, broken down
by type of impairment and areas of difficulty.
Recent trends in prevalence of disability are
discussed, along with issues of ethnicity and
disability, and the relationship between
poverty and disability.
Defining disabled children
The most widely used definition of disability is
that laid down in the Disability Discrimination Act
(DDA) of 1995 (see Box 1). However, consensus
on a definition has not yet been reached. The
definition used in the Children Act (1989) is
based on extremely outdated and derogatory
legislation from the 1948 National Assistance
Act.* In contrast, the World Health Organisation
International Classification of Functioning,
Disability and Health (ICF) defines disability as:
‘the outcome of the interaction between a
person with an impairment and the
environmental and attitudinal barriers he/she
may face’.3
Box 1: Disability Discrimination Act (1995) definition of disability
‘A physical or mental impairment which has a substantial and long-term adverse effect
on his ability to carry out normal day-to-day activities.’
Terminology
Throughout this report, the term ‘impairment’
refers specifically to functional limitations, such
as having partial vision. The term ‘difficulty’
describes problems with behaviour or learning.
The use of the term ‘disabled children’ reflects
the view that social, environmental and
economic barriers disable children with
impairments or difficulties. In this report,
‘disabled’ means prevented from achieving
individual potential. The term ‘children’ includes
children and young people.
A range of other terminology is used to
differentiate between types of impairment and
the severity of impairment. Impairment can be
broadly categorised as physical, sensory
(hearing or visual) and cognitive (including
behavioural). Some children have more than one
type of impairment.
Terms such as severe, complex, multiple,
profound, additional or special needs are used
to indicate degree of disability. No clear
definitions exist for these terms. This report uses
the terms ‘severely disabled children’ or ‘children
with complex needs’ to refer to the sub-group
of disabled children with the most severe
impairments.
Box 2: Impairment and disability
Models of disability
Ideological debates over the medical and social
models of disability are partly to blame for the
lack of consensus on a definition. The medical
model views disability as a feature of the person,
directly caused by disease, trauma or other
health condition; (medical) intervention is
required to correct the problem with the
individual. Many reject this view in favour of the
social model. This sees disability as a socially
created problem, caused by an
unaccommodating physical environment and
social attitudes (see Box 2). According to the
social model, disability demands a broader
political and social response to address this
range of issues.4 Both these models risk
oversimplifying disability, which has both medical
and social aspects. However, they do provide a
useful way of thinking about the needs of
disabled children.
This report adopts the social model as it
provides a broader framework within which to
examine the variety of issues and needs of
disabled children.
‘Impairment is what we have. Disability is
what we experience.’
Social model approach developed by disabled people in
5
1981 (International Year of Disabled People)
What happens when a child is disabled?
When a family first identifies that a child may have
an impairment, they have to go through a
complex process to get a diagnosis and access
services. Children and their parents face a
barrage of assessments by professionals, forms
to fill in and meetings to attend. This all happens
at a time when parents may be feeling a sense of
shock and grief. This complexity continues
throughout the child’s life. Many families are
constantly dealing with assessments, bureaucracy
and appointments, often without receiving
adequate services as a result. Some of the
agencies and assessments are shown in Figure 2
and discussed in detail throughout the report.
* National Assistance Act definition of disabled: ‘a child is disabled if he is blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness,
injury or congenital deformity or such other disability as may be prescribed; and in this Part — ‘development’ means physical, intellectual, emotional, social or behavioural development; and ‘health’
means physical or mental health’.
6
Ordinary lives
Background
Figure 2: Processes occurring when a child is diagnosed as disabled*
Additional
needs noticed
Health Diagnostic
assessment
Request child
Social assessment
Services Request carer
assessment
Diagnosis
Treatments
Equipment
Ongoing medical
assessments
Child
assessment
Complaints
process
Referral to
Services
Service
assessment
Services
Carer
assessment
Complaints
process
Referral to
Services
Service
assessment
Services
Education Early years/
school action plan
Early years/school
action plan plus
Statutory
assessment
DLA application
DLA assessment
DLA appeals process
DFG assessment
DFG appeals process
Other applications, assessments and benefits
Financial DFG application
Family Fund application
Family Fund assessment
Whizz-Kidz assessment
Other applications, assessments and services
Voluntary
Sector Whizz-Kidz application
Sendist
tribunal
SEN Statement
issued
Reassessments
Services
Regular benefits
One-off grant
Annual grants
Equipment provision
Time
‘She really needs a multidisciplinary
assessment. She has never had one, and she is
nine years old. It’s all been done piecemeal, in
dribs and drabs, over far too long a time period,
and I just think it’s wasted time really. The fact
that the only times the different disciplines have
talked to each other is when I have nagged
them into doing it, seems wrong to me. I find
this amazing. I don’t understand why health and
education can’t talk to each other about the
same child. Why is that so difficult?’
Parent 6
Counting disabled children
This section reviews available data on the
population of disabled children in the UK.
Why do we need to know?
It is important to understand the numbers of
disabled children and the types of impairments
they have, in order to plan and provide services.
Tracking figures over time reveals trends and
changes in the demographics of disabled
children. This is useful when planning for future
needs. Comparing data identifies where needs
are not being met and where additional
resources should be placed.
Data on disabled children in the UK is poor.
This reflects the lack of consensus on
definitions. Also, many people with impairments
do not consider themselves (and therefore do
not report themselves) to be disabled. Although
disability registers exist in some local
authorities, there is no national standard, and
no incentive to keep them up to date.
Consequently, they provide poor quality data.
Comparability of data from different sources is
limited because it is collected for different
reasons. It may have different age or
geographical cut-offs, or include only certain
types of impairments.
Number of disabled children
Every day, 75 children in the UK are born or
diagnosed with a disability.7 Based on data from
the Family Resources Survey, the Department of
Work and Pensions (DWP) estimated that in
2002 there were 700,000 disabled children in
Britain.8 Disability was defined according to the
DDA definition and children included 0–16 year
olds and 16–18 year olds living at home and in
full-time education. According to this data, 7%
of boys (400,000) and 4% of girls (300,000)
are disabled.9
There are
700,000 disabled
children in the UK
(5% of all
children).
The 2001 General Household Survey (GHS),
carried out by the Office for National Statistics
(ONS), estimated there were 789,000 children
under the age of 16 with an ‘estimated longstanding illness, disability or infirmity that limits
their activity’.10
Analysis of DWP survey data (the 2002 Families
and Children Study) by researchers at the
University of Lancaster used a broader definition
of disability. The results suggested that a
staggering 10% of all children are disabled. This
equates to just under 1.2 million children under
the age of 17 in Britain.11
* Note that this figure is a simplification of the process, which is likely to be non-linear and contain multiple assessments by the same professionals.
The exact process will depend on the child’s specific needs and the way local services are organised.
7
Ordinary lives
Background
Before these estimates were issued, policymakers and charities commonly used a figure of
320,000 disabled children (up to age 16). This
comes from a 1984 survey by the Office of
Population Censuses and Surveys (OPCS) which
was reanalysed in 2000.12 Despite the availability
of annually updated GHS data, policy-makers
continued to use this out-of-date underestimate,
which suggests a lack of serious political
commitment to the issue.
surveys (even allowing for the latter’s much lower
aggregate figures). The lack of clear and
accurate figures across data sources reinforces
the impression that understanding the numbers
and types of disabled children has not been a
priority for the government.
Severe disability
The Family Fund (FF) is a government funded
charity that provides grants to the families of
severely disabled children. Information gathered
by the FF provides the only detailed data
available on the conditions of a substantial subset of disabled children. It uses 58 main
classifications of conditions, each with up to 50
further specific sub-conditions, to categorise
children whose families apply to the fund. The
data is biased towards more severe conditions,
and is also skewed towards families on lower
incomes, because the FF has an income
threshold for supporting families.
The huge difference between these estimates
arises mainly from the different definitions of
disability used (See Appendix 1 for a summary of
estimates). NPC has used the DWP estimate of
700,000 disabled children throughout this report.
Types of impairment or condition
There are about 8,000 inherited disorders and
thousands of non-inherited medical conditions.2
It is difficult to break down estimates of disabled
children by impairment or condition because
many have more than one condition, have no
diagnosis, or one which changes over time.
However, some data is available to give a more
detailed picture.
The DWP estimate of 700,000 disabled children
can be broken down by ‘area of significant
difficulty’ (see Table 1). The most common areas
are mobility, communication and learning, (with
the possibility of some overlap). Data from the
Families and Children study can also be broken
down by impairment (see Table 2).
The top three conditions, accounting for over
35% of applications, are learning disability,
autism and cerebral palsy. The ten most
common conditions among families applying to
the fund have remained the same over the past
five years, as has their relative ranking (see Table
3). Recently, the FF has seen increases in
applications from families of disabled children
with these conditions. The biggest increase
between 1999 and 2004 was from families of
children with autism (84% increase), behaviour
disorders (71% increase) and heart disease
(46% increase).
Comparisons of data from different sources
cause confusion. In some respects (such as
learning difficulties) the breakdown shown in
Table 1 matches earlier data from the
Department of Health White Paper on learning
disability ‘Valuing People’.14 In other respects
(such as mobility impairments) the breakdown
differs markedly from the 1984 OPCS disability
Families still awaiting diagnosis make up the
largest group among families applying for the
first time (14%, over 1,600 families). Having a
diagnosis can give a good indication of how a
child may or may not develop. Without one, it
may be difficult to obtain services and benefits.
Living without a diagnosis also places additional
stress on family members.
8
Photograph supplied by Choices
Areas of difficulty
There are
about 8,000
inherited
disorders and
thousands of
non-inherited
conditions.
Ordinary lives
Background
Table 1: Areas of significant difficulty among children, DWP Family
Resources Survey 2002 9, 13
Area of life where child has significant difficulty
% of disabled
children affected
Numbers of
children
afffected*
Mobility — moving about
43
300,000
Communication — speaking, listening, reading, writing
43
300,000
Learning, understanding, memory, concentration
43
300,000
Understanding when in physical danger
29
300,000
Other area of life
29
200,000
Lifting, carrying or moving everyday objects
14
100,000
Manual dexterity — using hands for everyday tasks
14
100,000
Continence
14
100,000
Quantifying the
number of
disabled children
has not been a
priority for
government.
*Children may have more than one area of significant difficulty, therefore total is greater than 700,000.
Table 2: Impairments in children, Family and Children study 2002
11
% of disabled
children affected
Approximate
numbers of
children afffected*
Intellectual disability
45
536,400
Chest/breathing problems
28
337,200
Physical impairments
18
212,400
Skin problems/allergies
13
156,000
Stomach/liver disorders
6
68,400
Hearing impairments
5
64,800
Epilepsy
4
42,000
Mental illness
3
37,200
Visual impairment
3
34,800
Heart problems
3
33,600
Diabetes
3
33,600
Congenital birth defects
3
31,200
Impairment
*NPC calculation: percentage applied to total number of disabled children (1.2 million in this study). Children may have more than one impairment,
therefore total is greater than 1.2 million.
9
Ordinary lives
Background
Table 3: Ten most prevalent conditions among families applying to the Family Fund,
1999/2000 to 2003/200415
Number of applications per year
1999-2004
average*
2003/2004
% of total
applications by
condition
2003/2004*
Learning disability
7,733
8,833
15
Autism
5,590
6,035
10
Cerebral palsy
4,785
5,914
10
Behaviour disorders
2,976
3,362
6
Down’s syndrome
2,657
3,263
6
Deafness/hearing impairment
2,049
2,192
4
Central nervous system disorder
1,983
2,084
4
Epilepsy/convulsions
1,613
1,848
3
Global developmental delay
1,379
1,624
3
Heart disease
1,235
1,471
3
Pending diagnosis
n/a
1,897
3
TOTAL
n/r
38,523
67
Condition
*NPC calculations based on Family Fund data.
There are up to
6,000
technologydependent
children in the
UK.
10
Technology-dependent children
Children with life-limiting conditions
The term ‘technology-dependent’ describes
children who use one or more medical devices
to compensate for the partial failure or loss of a
vital body function. Devices include dialysis
machines, ventilators, feeding pumps and
suction machines. These children require a
technically skilled carer to look after them, either
a professional or a trained parent or carer. In
2001, it was estimated that there were 6,000
technology-dependent children in the UK.16
Life-limiting conditions are those for which there
is no reasonable hope of cure and from which
children will die, either during childhood or in
early adulthood. Having such a condition brings
with it medical and emotional complications
which add to the burden of disability and illhealth. Many life-limited children are also
disabled. Life-limited children and their families
have additional needs, which are explored in
detail in Valuing short lives (2005).
Some technology-dependent children have
chronic respiratory problems and require
continuous mechanical ventilation. In 1997 a
national database to register the number of
these children was set up; 136 children under
16 years were registered. This figure rose to 241
children in 2000, an increase of 77% in three
years. Medical advances mean that more infants
and children survive diseases, accidents and
genetic conditions that were previously fatal. The
number of children requiring long-term ventilation
is expected to grow significantly.17 Many of these
children also have additional care needs, such
as help with feeding, toileting and mobility.
In England and Wales, 5,535 people under 24
die each year, over 60% (3,435) from natural
causes.18 The biggest ‘killers’ (but each
accounting for less than 25% of deaths) are
cancer, perinatal conditions and congenital
abnormalities, conditions relating to the nervous
and musculo-skeletal systems, and organ failure.
These children have long-term needs. Although
the number of deaths per annum may be small,
the number of cases needing care at any one
time is much higher. NPC estimates that there
are 25,000 children under 19 with life-limiting
conditions in the UK.19
Ordinary lives
Background
Prevalence and trends
Box 3: Very premature babies and disability
Over the past few decades, the incidence* and
prevalence of disability in children has
increased. The Office of National Statistics (ONS)
used data from the FF and the GHS to compare
changes in mild and severe disability among 0–5
year olds and 5–19 year olds in the UK between
1990 and 2000.20 FF data was used to estimate
severe disability. The GHS data was used to
estimate mild disability. The analysis showed that
between 1990 and 2000, the incidence of
severe disability increased from 6 to 8 per
10,000 population. The incidence of severe
disability in boys increased from 7 to 11 per
10,000 population. Among girls the figure fell
slightly from 6 per 10,000 in the mid-1990s, to 5
per 10,000 in 2000.
†
Recent medical advances have increased the survival chances of premature babies.
The Epicure study followed very premature babies (those born at 25 weeks gestation
or less) born in 1995, at birth, one year, two-and-a-half years, and six years of age.24-26
The children were given a range of neuro-psychological tests to establish their
development relative to children born at full term. The study found that only 308 (24%)
of 1,289 live born very premature babies survived to six-and-a-half years. Of children
who reached six, 46% had no problems, 29% had low normal or mildly impaired
development, 10% moderate impairments and 14% were severely disabled. Although
no directly comparable data is available, around 2% of the general population score in
the moderate to severe impairment range using the same tests.27 It is possible to
conclude that the prevalence of disability in very premature babies is markedly higher
than in the general population.
The study demonstrates for the first time the prevalence of disability among very
premature babies. It provides some of the previously absent data that parents and
doctors need to make decisions about a very premature baby. These decisions are
emotionally charged and present ethical dilemmas. If society chooses to spend large
amounts of money keeping very premature babies alive**, then it must guarantee that
adequate services and financial support are available to meet the lifetime care needs
of that child.
Over the same period, incidence of mild
disability increased from 17 to 18 per 10,000
population. Again, this masks a different rate of
change in mild disability between the sexes.
When viewed over a longer time period, trends
in the GHS data show a broadly similar pattern
of increases in mild disability. Between 1975 and
2000, prevalence of limiting long-standing illness
increased from 2% to 4% in females and from
3% to 4% in males aged 0–4 years old (see
Figure 3). In older children, prevalence increased
from 6% to 9% in boys and 4% to 8% in girls
(see Figure 4).
Prevalence of disability
is increasing.
Figure 3: Prevalence of limiting
long- standing illness (mild disability)
in children age 0–4, 1975–2000
(selected years)10
Figure 4: Prevalence of limiting
long- standing illness (mild disability)
in children age 5–15, 1975–2000
(selected years)10
10
10
9
5-15 males
5-15 females
9
8
8
7
7
6
6
5
5
4
4
3
3
2
2
1
1
0
1975
1981
1985
1991
1995
2000
0
0-4 males
0-4 females
1975
1981
1985
1991
1995
2000
* Babies being born with an impairment, children being newly diagnosed with, or aquiring, a disability in a given time period.
†
Disabled children as a percentage all children.
** It is estimated that it costs £330,000 to establish and run each new neonatal intensive care cot. Specialised transport services needed to support neonatal services
28
can cost around £1 million to establish and another £1 million per year in running costs.
11
Ordinary lives
Background
Evidence suggests that the prevalence of
disability is rising (NPC could not find evidence
Although
prevalence of
disability is
increasing, the
causes of this are
not fully
understood.
of the statistical significance of this increase).
This may be for a combination of reasons.
Advances in neonatal and medical care mean
that more disabled children with complex
multiple disabilities and rare conditions are
surviving (see Box 3) and life expectancy is
increasing.21 Automobile design factors (e.g.
airbags) have also increased the survival rates of
people suffering serious injury from road traffic
accidents.17 Changes in detection and diagnosis
of certain conditions may also contribute to
increasing prevalence. For example, it is not
possible to tell if the increase in the number of
children diagnosed with autistic spectrum
22
disorders is because of changes in diagnostic
practices or an increase in the actual number of
autistic children.23
Ethnicity and disability
Data on the ethnic origin of disabled children in
the UK is poor; however the Family Fund (FF)
provides some evidence that incidence of
disability is higher among certain black and
minority ethnic (BME) groups. Families of
Bangladeshi (0.8%), Pakistani (3.6%), African
(1.6%) and Caribbean (0.9%) ethnic origin were
over-represented (% overestimation shown in
brackets) in the FF data for 2003/2004
compared to the 2001 Census. However, this
data must be interpreted with caution for a
number of reasons:
• Not all families provide data on their ethnic
origin, which may introduce bias.
• The total proportion of BME families in the
Census represents all income levels, whereas
the total proportion of BME families applying to
the FF are, by definition, from a lower income
bracket (FF only awards grants to families with
income below a given threshold). Therefore,
BME families may be over-represented in the
FF data because they are poorer, not because
of a higher incidence of disability.
• Populations of BME groups may have also
changed between 2001 and 2003/2004,
making strict comparison with 2001 census
data invalid.
A more recent and less biased study found no
significant associations between ethnicity and
risk of disability. Again, a lack of data on ethnic
origin for children in the study means the results
should be interpreted with caution.11 Additional
data and analysis are required.
Photograph supplied by Merseyside Access to Play
There is some evidence that certain ethnic
groups — Indian, Pakistani, Bangladeshi and
Chinese — are less likely to report disability.29
This is of great concern because it means
children from these backgrounds receive fewer
services. Another challenge for service providers
is ensuring that information and publicity material
is in appropriate languages. Although there are
uncertainties surrounding the prevalence of
disability among BME groups, it is known that
they are disproportionately poorly served and
supported (see Section 2).
12
Poverty and disability
Poverty and disability are linked. The relationship
may work both ways, but disability is more likely
to cause poverty than the other way around.
There is no evidence that genetic conditions are
related to poverty. However, children born to low
income families are more likely to be of low birth
weight, which is sometimes related to higher risk
of future health problems, including slower
development of motor and social skills.29
Ordinary lives
However, the strength of the evidence is unclear.
In the case of moderate learning difficulty there
is evidence of a link between higher incidence
and lower socio-economic status.14
There is clear evidence that disability causes
poverty. Families with children with long-standing
illnesses have lower incomes, because parents
may be unable to work due to caring
responsibilities. There is a large amount of data
showing that families with disabled children are
poorer. This is not just because of low income,
but also high necessary expenditure. Income is
often used to indicate poverty, but alternative
definition links poverty to necessary expenditure.
Families with disabled children typically have
both low incomes and high necessary
expenditure (Section 2 examines this further).
The relative strengths of these relationships are
encouraging: funders and policy-makers can
more easily influence poverty than the incidence
of disability. It should be possible to break the
links from disability to poverty.
Places of residence of
disabled children
Estimates suggest that between 85%30 and
98%31 of disabled children live with their families
(including long-term foster families). Some live in
residential schools or care homes for long
periods of time. Data on the numbers of children
and length of time spent in each setting is not
available because this information is not routinely
collected. However, a recent study provided a
snapshot of the location of disabled children in
residential placements in England on a single day
in 2002 (see Figure 5). Out of a total of 2,380
children, 40% were in foster care, 25% were in
residential school and 15% were in an NHS
establishment.32 These figures show the use of
residential care for disabled children on a single
day, and it is likely the total number of children
placed during the course of a year will be greater.
The figures exclude children under a series of
short-term placements; a large proportion of
disabled children would fall into this category.32
Figure 5: Snapshot of looked after disabled children on
a single day (number and %)32
All other placements 90 (4%)
Background
98% of disabled
children live with
their families.
Secure units 5 (0%)
Homes & hostels
inside council
boundary 375 (16%)
Foster care 965 (40%)
Homes & hostels
outside council
boundary 235 (10%)
Residential
accommodation
not subject to
children’s homes
regulations 15 (1%)
Residential care
home 80 (3%)
Residential school
595 (25%)
NHS/Health Trust
establishment 15 (1%)
13
Ordinary lives
Background
Section summary: data on
disabled children
Data on children in residential schools is
routinely collected for special educational needs
(SEN) rather than disability, but there is a large
overlap. There are about 10,500 pupils in
residential special schools.32 Nearly all of them
have formal statements of SEN. However, data
is not collected on disability. The biggest single
group in special schools is teenage boys with
emotional and behavioural difficulties. Increases
in the number of children with complex needs
are likely to lead to increased demand for fulltime residential care placements, which are
already overstretched.
There are an estimated 700,000 disabled
children in the UK.13 The most common
impairments affect communication, mobility and
learning ability; the most common severe
disabilities are learning disabilities, autism and
cerebral palsy. The majority of disabled children
live with their parents; however a significant, yet
un-quantified, minority live in residential schools,
children’s homes or NHS facilities. The number
of disabled children is increasing, in part
because of medical advances.
Data on admissions to healthcare settings does
not specifically identify disabled children. The
most common reason for admission of children
who spend long periods in hospital is
categorised as ‘mental and behavioural
disorders’. Many of these children are likely to
be disabled. In the last three years, 2,200
children spent over six months in hospital; 245
of them spent more than five years in hospital.32
The wide variety of impairments, and lack of
consensus on a definition of disability, means
that the quantitative data on disabled children is
poor. Consequently, key issues, such as the
relationship between disability and ethnicity, and
between poverty and disability, are not fully
understood. Evidence suggests that the causal
relationship between disability and poverty is far
stronger than the one between poverty and
disability. It also suggests that incidence of
disability does not differ markedly between
ethnic groups, although BME families are less
likely to receive appropriate support. The lack of
systems in place to identify and record disabled
children, and failures to use existing data, show
that policy-makers and service planners give a
low priority to the needs of disabled children.
Photograph supplied by Merseyside Access to Play
Disabled children in residential settings are
particularly vulnerable to abuse for a number of
reasons. It is also more difficult for disabled
children to report abuse.32, 33 A future NPC
report will examine child abuse in more detail.
14
Key issues
such as the
relationship
between
poverty and
disability are not
yet fully
understood.
1
Children
The needs of disabled children include
friendship, leisure and play, holidays,
equipment, transport, communication and
education. Most of these are common to all
children. However, disabled children are
often prevented from fulfilling their needs
because of inaccessible or poorly designed
services, ignorant attitudes and parents’
financial circumstances. Charities can meet
these needs. They lobby to improve services
and support disabled children to overcome
barriers that prevent them from enjoying
ordinary childhoods.
The UK has signed up to the ‘UN Convention on
the Rights of the Child’. This sets out children’s
rights to family life, freedom of expression,
education and protection from abuse. The rights
of disabled children are specifically addressed in
this convention (see Box 4). Many disabled
children do not get to enjoy their rights, simply
because they are disabled. This is wrong. Action
must be taken to ensure that all disabled children
can enjoy the things that make childhood special.
• Accessibility problems ranging from
bad attitudes to lack of toileting and
changing facilities.
• Experience of education.
• Financial barriers.
• Exclusion from popular culture.
These prevent disabled children from having
friends as well as happy and fulfilling social lives.
Allowing barriers to persist creates and
reinforces loneliness and social isolation
(see Figure 6). Because leisure activities are an
opportunity to make friends, preventing disabled
children from accessing them deprives them of
friendship. Removing or easing these barriers
should be a priority.
Figure 6: Impact of barriers to leisure
and play
Poor accessibility
Education experience
Barriers
to
leisure
& play
Lack of information
Box 4: UN Convention on the Rights of
the Child
‘[…] a mentally or physically disabled child
should enjoy a full and decent life, in conditions
which ensure dignity, promote self-reliance and
facilitate the child’s active participation in the
community.’
Children’s needs
Bad attitudes
Financial barriers
Lack of provision
Reduced
access
to
leisure
Exclusion &
isolation
Friendship, leisure and play
What is the situation?
Barriers to leisure and play
Many barriers to leisure, play and making friends
are put in the way of disabled children.
Mainstream leisure and play facilities are failing
to meet the needs of disabled children. This
increases the need for specialist provision.
Disabled children face the following barriers:
• Lack of friends and appropriate supporters.
• Lack of provision and information
about services.
Loneliness
& lack of
friends
Friends and supporters
Disabled children consistently say that leisure and
play, after school, in the holidays and at
weekends, are the most important missing
elements in their lives.34 They feel frustrated that
legislation is frequently ignored. Young people
identify leisure as a crucial way to have fun and
make and sustain friendships. Being with friends is
a leisure activity in itself and taking part in leisure
activities with friends, not surprisingly, enhances
the enjoyment. Disabled children enjoy the same
types of leisure activities as their non-disabled
peers. These range from watching TV, to playing
outside and going to the cinema or bowling.35
‘
I am excluded
from so much
and I am so
lonely and have
few friends.
‘
All children deserve and need to make friends,
play and take part in leisure activities and
hobbies. For young children, play is part of
learning and development. For older disabled
children who are socially isolated because they
don’t attend school or live far from school
friends, the availability of leisure activities is
crucial. Disabled children are denied leisure
activities that many of us take for granted.
Disabled young person
36
15
Ordinary lives
‘
Children
My daughter
has never been
invited to a
birthday party,
or to anyone’s
home to play.
‘
Parent
37
Having no friends, or none that live close by,
prevents children enjoying group activities.
This becomes a self-perpetuating situation
of loneliness and isolation.
For teenagers, having an adult supporter
(personal assistant or volunteer) or parent with
them at all times is embarrassing. At the same
time, having no supporter may prevent them
being able to go out without their parents.
‘The biggest barrier is that I’m not allowed to go
out on my own or with my friends. There is
always an adult with us.’
Disabled young person 36
Lack of information and provision
‘
My seven year
old daughter is
in nappies and
the only
solution is to
lay her on the
floor of the
disabled toilet.
I hate having to
put her onto
the floor of a
public toilet.
‘
38
‘I have been trying to find Saturday activities for
him. There is nothing at all for special needs
except one drama group especially for children
with Down’s Syndrome. I want to weep when I
look at all the lists of riding/swimming/drama
clubs open to other children, all of which he
would enjoy. Normal clubs don’t have enough
staff to cater for his needs.’
Parent 38
Accessibility of leisure and play facilities is about
more than physical access. It encompasses
provision of adequate toilet and changing
facilities, provision and respect for disabled
parking areas, and signs and markings for
children with hearing and visual impairments.
In spite of The Disability Discrimination Act (DDA),
Contact a Family found that the majority of
leisure facilities had no suitable toilet and
changing rooms. Queues are boring and
frustrating for most children, but they are
particularly distressing for children with autism or
behavioural problems. The possibility of having to
queue for a long time can prevent access.
Contact a Family found that 73% of families were
daunted by long queues.
Attitudinal barriers also prevent disabled children
from enjoying normal activities. Frequently,
disabled children and their families face a lack of
common courtesy and respect. Contact a Family
found that almost 70% of families were put off
visiting leisure facilities because of being made
to feel uncomfortable. Rigid thinking and
ignorance of staff were a common source of
complaint. Disabled children emphasise the
importance of feeling welcome and being
accepted. They define this as: people being nice
and polite, knowing their name, introducing them
to other people, making friends and not being
nasty.38 All too often, this simply doesn’t happen.
‘Our son has severe learning difficulties with no
communication and inappropriate behaviour. We
are prevented from using facilities because other
people do not accept our son’s reactions.’
Parent 38
Photograph supplied by Merseyside Access to Play
Parent
In a recent survey by the charity Contact a
Family*, 27% of parents reported their child had
not joined a local club because of a lack of
information. Other parents said it was because
they felt that their child’s special needs wouldn’t
be met (66%) and/or that a specialist club would
be better (52%). More than half (55%) said that
distance and a lack of local suitable facilities was
a barrier.38 A lack of age appropriate activities,
especially for teenagers is also a problem.
Although disabled children want and should
(morally and legally) be able to access
mainstream leisure activities, they also value
opportunities to spend time with other disabled
children. There is a strong case for provision of
both specialist and integrated leisure and play
facilities (see Box 5).
Accessibility and attitudes
* Contact a Family is a national charity which provides support and advice to families with disabled children.
16
Ordinary lives
Children
Box 5: The need for inclusive and specialist leisure provision
Isobel is a single parent of two boys. Ben, aged 13, has cerebral palsy and Nick, aged 11, has autistic
spectrum disorder. Ben attends a mainstream school and Nick attends a special school. Nick needs constant
supervision and Isobel receives some support from social services. Nick stays at a residential short break unit
for three nights a month and attends a Saturday club for three hours a fortnight. Isobel has been offered one
further overnight stay and two extra days during the school holidays, but not at times that are suitable for the
family. Isobel runs the summer holidays like a military campaign. She describes it as 44 days of being
organised. Ben and Nick have distinct needs. Ben needs more rest and Nick needs to be active. This year Nick
will attend a play scheme for two weeks for children with severe learning disabilities. Ben, who is more
independent, will probably attend activities run by the youth service and will spend time with friends. He will
also take part in activities for disabled people at an outdoor centre, including archery, sports and crafts.
Experience of education
Experience of education has a profound effect
on children’s social lives. Children in special
schools often live far away, making it harder to
socialise with school friends outside of school.
They may also lack confidence to socialise with
their non-disabled peers because they have not
had the opportunity to do so in school. Disabled
children in mainstream schools are often treated
differently to other children, which makes it
harder for them to interact socially. For those
children who feel isolated in mainstream schools,
participation in leisure activities can be a lifeline.
‘It’s a bit harder being out in the real world after
special school.’
‘Mainstream schools treat you differently to the
other students.’
Disabled young people 36
Financial barriers
Families with disabled children often have low
incomes and face higher costs (see Section 2).
When money is tight, leisure activities may be
the first things to be sacrificed. Few leisure
facilities have reduced charges for disabled
children and their carers.38 Even where they do,
parents or children feel embarrassed at having to
explain the nature of ‘invisible’ disabilities in
order to claim them. Unsuitable and expensive
public transport may force disabled children to
rely on taxis. For many, this is unaffordable. In
the Contact a Family survey, almost 50% of
families reported that budget constraints limited
their access to leisure; 25% reported that they
couldn’t take their children to activities because
of lack of suitable transport.38
Exclusion from popular culture
Sensory impaired children are excluded from
popular culture, such as books and music. This
makes it harder for them to make friends based
on shared enjoyment of these activities. For
visually impaired children there is a delay
between the publication of popular books, such
as the Harry Potter series, and their availability in
large print. This means that by the time they can
participate in discussion and play related to it,
other children are no longer interested.
Watching and participating in sport is an integral
part of popular culture, and one which disabled
children are often excluded from. Sport England
39
sent a questionnaire in 1999 to 5,600 disabled
children and young people aged 6–16 years.
Almost 50% responded. Although most
participated in sport, they did not participate as
much as other children or as much as they
wished. The most common barriers were: lack of
money, health considerations, unsuitability of local
sports facilities and having no one to go with.40
Constraints to service provision
Service providers may not be able to afford to
run services for disabled children who have
greater support needs than the usual staff to
child ratio. However, not all disabled children
have such needs. Difficulties in finding suitable
premises, obtaining insurance and staffing
difficulties (recruitment and retention) also
prevent service providers from offering play
schemes to disabled children. Lack of
coordination between schemes may mean that
timings overlap, resulting in reduced
opportunity. Many services are unable to offer
flexible access on a needs basis.39 The result of
all these factors is inflexibility, rationing and
under-provision of essential play and leisure
services for disabled children. Erroneous or
overzealous interpretation of health and safety
laws by service providers can also result in
exclusion of disabled children from play and
leisure activities. Recognising this, the Health
and Safety Executive has supported the
following statement by the Play Safely Forum:
‘All children both need and want to take risks in
order to explore limits, venture into new
experiences and develop their capacities, from a
very young age and from their earliest play
experiences. Children would never learn to walk,
climb stairs or ride a bicycle unless they were
strongly motivated to respond to challenges
involving a risk of injury. Children with disabilities
have an equal, if not greater, need for
opportunities to take risks, since they may be
denied the freedom of choice enjoyed by their
non-disabled peers.’ 5
‘
I had to stop
taking my son
to school club
once a week as
it cost me too
much money in
a taxi to collect
him. I want him
to have a
normal life; I feel
his childhood is
slipping away…
‘
Barnardo’s
Parent
38
Environmental
and attitudinal
barriers can often
be easily rectified.
Adapting playgrounds and leisure facilities to suit
the needs of all disabled children is not possible.
However, it is not necessary (either and should
not be used as an excuse to close down nonaccessible facilities). The most important barriers
are often attitudinal or environmental ones that
can easily be rectified.
17
Ordinary lives
Children
What is the government doing?
The Audit Commission’s evaluation of the Quality
Protects initiative* found improvements in the
quality and availability of services for disabled
children, particularly in early years play and
leisure services.6 However, there is still a national
shortage of inclusive and specialist provision,
with many initiatives subject to short-term or
insecure funding.39
Local authorities are no longer required to ringfence funding for disabled children’s services.
This threatens improvements brought about by
the Quality Protects initiative. Similarly, cuts to
the Children’s Fund are likely to mean a
reduction of inclusive play facilities, many of
which take place during summer holidays when
there is a greater need for activities. For
example, in Liverpool, the Children’s Fund
funded 61 projects (not all for disabled children)
in its first round, which was cut to 30 in the
second round.41 On a more positive note, £200
million of National Lottery funding has been
earmarked for new and improved children’s play
facilities. The government has drawn up a
national strategy on how the funds will be spent,
paying particular attention to the needs of
disabled children (although none of the money is
ring-fenced for disabled children specifically).
Charities will play a vital role in delivering leisure
and play services funded by this money.
†
Box 6: Legislation on leisure and play
The Children Act (1989) recognises that ‘children’s need for good quality play
opportunities change as they grow up, but they need such opportunities throughout
childhood to reach and maintain their optimum development and well being’. The Act
says that local authorities should provide services to minimise the effect of disabilities
on the lives of disabled children and give them opportunities to lead as normal a life as
possible. Authorities must also promote access for all children to the same range
of services.
The Disability Discrimination Act (1995) makes it unlawful to discriminate against
disabled people. It requires service providers to ‘make reasonable adjustments’ to
policies, practices and procedures that discriminate. Part III of the Act has recently
come into force. It covers indoor and outdoor adventure playgrounds, leisure centres,
play areas in public parks and playgrounds. Service providers may have to consider
making permanent physical adjustments to their premises.
The Special Needs Education and Disability Act (SENDA) (2001) places a duty on
all education providers in Wales, England and Scotland to ensure that they have made
reasonable adjustments to include a child with a disability or special educational need
within a mainstream setting. The focus is on schools to include disabled children in all
aspects of school life. Schools have to justify not including disabled children on school
trips, holidays and when accessing leisure opportunities.
Article 31 of the UN Convention on the Rights of the Child recognises ‘the right of
the child to rest and leisure, to engage in play and recreational activities appropriate to
the age of the child, and to participate freely in cultural life and the arts’.
Various pieces of legislation recognise the
importance of play and leisure, and the need to
ensure that leisure opportunities are inclusive and
accessible to all children (see Box 6). However,
this is not yet having the impact needed for
disabled children. Local and national government
need to do much more to uphold these laws.
Disability awareness and inclusiveness training
for staff working in leisure and play services are
an important start in breaking down negative
attitudes. Staff turnover means that training must
be regularly repeated. A number of charities
provide inclusiveness and disability awareness
training funded by statutory sources. However,
adequate follow-up after training is vital to
ensure that attitudes have really changed and
that the service is not turning people away or
treating them poorly. This is the role of the
statutory sector, which should have
inclusiveness policies at the local level that are
enforced in all services. Where these policies are
not in place or not being actioned, there is
clearly a role for local and national lobbying.
Compliance with Part III of the DDA, relating to
physical barriers or lack of essential facilities (e.g.
accessible toilets and changing facilities), is poor.
A recent survey by the charity Scope found that
only 18% of leisure facilities were fully
accessible.42 In the long-term, the threat of legal
action and poor publicity may encourage
facilities to improve accessibility. Unfortunately
the phrase ‘reasonable adjustment’ weakens the
power of the DDA. It creates confusion, even
among those who wish to make their facilities
accessible. There are no clear specifications laid
down to ensure a minimum standard for new
buildings. Local authorities can improve this by
ensuring that all of their premises are accessible,
and checking that planners do everything
possible to help businesses improve access to
their premises. They could also consider making
DDA compliance a condition of being granted
licences and other local authority permissions.42
The Office of the Deputy Prime Minister (ODPM)
recently commissioned its own research into
developing accessible play space. The resulting
good practice guide highlights the importance of
play for all children and the need to consult and
engage disabled children and their families.43 It
gives useful advice, information, examples,
resources and contacts. However, it is criticised
for an emphasis on developing new playgrounds
and the importance of technical design to
overcome barriers; it pays less attention to other
barriers, such as attitudes of other parents or
children, bullying and cost. Guidance on these
issues is provided in a National Playing Fields
Association report.5 It is the responsibility of local
authorities to use these guidelines and
implement appropriate policies.
* Quality Protects was a government initiative aimed at improving services for vulnerable children (see Appendix 3). It ended in 2004.
†
18
Restrict the use of money for a specific purpose.
Ordinary lives
What is the charitable sector doing?
Sometimes disabled children need the support of
a friend or volunteer buddy to enable them to
participate and enjoy leisure and social activities.
There are a number of charities involved in
supporting disabled children in this way.
Mencap’s ‘get together’ campaign trains
volunteers to help children with learning difficulties
go to out-of-school clubs. The charity Out and
About uses volunteers to help disabled children
and young people access a range of mainstream
leisure activities, from Brownies to art galleries.
The National Autistic Society runs a volunteer
befriending scheme for people with autism.
Circles Network supports disabled people to
build social networks to ensure that they have
an active social life. They work with children in
and out of school to help them build confidence
and friendships that last many years. Write
away is a charity that helps disabled and nondisabled children communicate and make
friends through letters, Braille and audio tapes.
Another approach is to place a trained staff
member or volunteer in a mainstream leisure
facility so that children with additional needs
can attend without the stigma of having an adult
with them. Merseyside Access to Play
supports disabled children to access local
mainstream leisure and play facilities in this way.
It also provides inclusiveness and disability
awareness training for a range of organisations
and leisure facilities.
Charities play a
crucial role in
providing
information about
inclusive and
specialist leisure
services.
Charities play a crucial role in providing
information about inclusive and specialist leisure
services locally and nationally. A number of them
do this via factsheets and websites including
Contact a Family, Kidsout, and Artsline, who
have an on-line directory on the accessibility of
London-based arts venues.
Charities often provide leisure services for
disabled children, although many of these are
wholly or partly funded from statutory sources.
The Attlee Foundation runs inclusive play
projects, a youth group and a range of after
school leisure activities in Tower Hamlets. It is
currently building a multi-purpose facility to
provide a range of play, sport, leisure and
learning facilities for children with and without
special needs. Barnardo’s Spark Centre in
Tower Hamlets provides a range of services,
including an under-fives play and activity service
for disabled children and a community based
Saturday activity programme for children with
autism. Kids provides play schemes, youth clubs
and befriending services for disabled children. It
recently merged with Kidsactive, which runs
adventure playgrounds for disabled children.
Half Moon Young Peoples Theatre Company
in Tower Hamlets produces plays and runs
drama projects in schools and the community
that are fully inclusive and cater for a range of
needs and abilities. Oily Cart Theatre Company
puts on plays and performances for children with
learning difficulties and/or sensory impairments
in schools, nurseries, theatres and community
venues. Epic Arts in Tower Hamlets runs
integrated arts workshops (dance, music, poetry,
art) for disabled and non-disabled people.
Toy libraries are an excellent way for children to
access a wide variety of specialist toys — often
more expensive than non-specialist toys. They
usually provide support for parents to help them
learn how to get the best out of play with their
children. These are generally funded from
statutory sources, with some charitable income.
Photograph supplied by Merseyside Access to Play
In summary, the government is making efforts to
improve access to leisure and play services for
disabled children, but the pace of change is
slow and more needs to be done. Having
legislation in place is not sufficient to drive
change. Lobbying and advocacy by and on
behalf of disabled children is vital to ensure that
improvements happen soon. Without this,
disabled children will continue to be excluded
from the leisure activities that other children take
for granted.
Children
19
Children
‘
It’s cool that
we’re friends –
we can learn
from each
others
differences!
‘
Young person
44
‘
I am getting
quite a lot of
help at school.
Recently I had
decided to
have no help in
two of the
lessons and
right now my
friend helps me
in those
lessons.
‘
Disabled young person 45
20
The National Association of Toy and Leisure
Libraries is a national umbrella body providing
information and support (e.g. toy appraisals,
disseminating best practice) to toy libraries
throughout the UK. Toyhouse Libraries
Association of Tower Hamlets provides
support for all toy libraries operating or wanting
to set up in the area. It also runs a number of
toy libraries with stay and play sessions and a
mobile toy library for families who cannot attend
the sessions. PSS Liverpool’s Family and
Children’s Project runs a toy library with a
number of stay and play sessions. Kidsout gives
grants to fund special toys, terrain buggies, fun
days out, holidays and short breaks for parents
and disabled children.
The National Blind Children’s Society produces
bespoke copies of popular children’s books for
visually impaired children, through its
‘CustomEyes’ programme, charging only the
recommended retail price. It also negotiates with
publishers to try and make books available for
customisation pre-publication, so that visually
impaired children don’t have to wait to get them. It
produces curriculum and revision guides for
visually impaired children for purchase by local
authorities. RNIB also has a talking book service
and the charity Listening Books has a range of
educational publications available on audio format.
Local authorities are responsible for providing a
broad range of leisure facilities for young people,
but in many instances fail to include disabled
children. Lobbying at local level is needed to
improve this situation. Disabled children play a
vital role in influencing service provision; charities
support them to do this. For example, the
Children’s Society produced a CD-Rom
‘Ask-us’ which consulted with disabled children
about what they want. It also has a project that
promotes the inclusion of disabled children in
play and leisure activities in their own
communities.
Contact a Family supports parents to form
local groups, which are a potentially powerful
way of lobbying for improved services. Circles
Network runs the Partners in Policy Making
training course, which empowers parents of
disabled children to lobby and work
constructively with policy makers to improve
services. Scope is campaigning for improved
access and facilities for disabled people,
particularly in leisure facilities, and enforcement
of the DDA.
What are the outcomes of friendship,
leisure and play?
Overcoming the barriers that prevent disabled
children from accessing mainstream leisure and
play facilities is likely to reduce demand for
specialist services. However, these should still
exist for as long as children and families require
them, and until mainstream services are truly
inclusive for all.
The benefits of leisure and play for children are
intangible and difficult to measure. However, it is
every child’s right to enjoy a happy and fulfilling
childhood. Play is a critical part of learning; it
helps children develop and express themselves,
use their imagination and understand how things
work. For older children, leisure builds
confidence and gives them the skills to make
friends and develop relationships. Increased
opportunities for leisure and recreation for
disabled children are important to combat
isolation and loneliness. Having friends can help
them cope with school and other situations.
Friendship and leisure form a virtuous circle:
having more friends creates more opportunities
for leisure; this in turn helps children increase
their social networks and build confidence about
what they can achieve.
‘I made loads of friends during the summer
which always makes me happy. My best friend
was Robert.’
Disabled young person
45
Photograph supplied by Merseyside Access to Play
Ordinary lives
Ordinary lives
Encouraging and helping disabled children to
interact with their non-disabled peers has
additional benefits to those purely arising from
friendship. In the long-term, children who interact
positively with disabled children are more likely to
help change attitudes within society.
Holidays
Holidays are especially important for disabled
children and their families simply because their
lives are difficult in so many other ways. For
disabled children who have limited access to
leisure and play, a holiday may be their one
opportunity to have fun with their peers. Families
often have little time left after work, caring
routines and appointments with specialists to
enjoy quality family time together. Money is a
major constraint; additional costs related to
disability and lower incomes for parents mean
that a holiday is too expensive for many families
— no matter how much it is needed.
There is not a clear distinction between short
breaks (see Section 2) and holidays. However,
holidays can be different from short breaks in
their duration (they are longer), frequency (usually
once a year or less) and the fact that holidays
can be a family event with all members of a
family enjoying time together in a relaxing
environment away from the troubles of home
and work.
The barriers to having holidays are similar to those
described above for leisure and play. They include
attitudes, access, environment and finance. There
are additional barriers, such as difficulty in finding
a travel agent or tour operator able to cater for
additional needs and obtaining insurance.
Merseyside Youth Association’s Choices
project in Liverpool provides residential holidays
for young disabled people in accessible
accommodation around the country. Wherever
possible it supports the young people on an
individual basis after the holiday, to help them
access mainstream leisure and social activities.
Activenture provides one week residential
outdoor pursuits holidays for disabled children
with a wide range of needs. A young volunteer
acts as a buddy and carer. Afasic organises
activity week holidays for children with speech
and language disorders.
What are the outcomes of holidays?
Holidays are about fun, enjoyment and
relaxation. A study looking at the benefits of
holidays for children in public care (including
children with learning difficulties) identified a
number of benefits. The most important was
that young people recognised that having a
holiday was what everyone else did, and
therefore felt normal. Other benefits included
relaxing, learning new skills, experiences such as
sports or activities, a break from routine and
educational experiences, such as using different
currency, language or tasting new foods. Carers
reported increased self esteem, confidence and
maturity among young people.46
‘The holiday is good for you not only for your
body, but for everything.’
Young person
Children
Merseyside Youth
Association’s
Choices project
in Liverpool
provides
residential
holidays for
young disabled
people in
accessible
accommodation
around the
country.
46
Equipment, communication
and transport
What is the situation?
The Family Fund (FF) is a government funded
charity which provides help towards holiday costs
when the family includes a severely disabled child
under 16. Grants vary in size and can be used
towards family holidays with or without the child.
However, eligibility is subject to an income
threshold. Another limitation of the FF is that
families can apply only once per year. There is a
large role for charitable money to help disabled
children have independent or family holidays.
What is the charitable sector doing?
Charitable organisations that provide signposting
to suppliers and funders of holidays for disabled
children and their families include Contact a
Family, Royal Association for Disability and
Rehabilitation (RADAR), Holiday Care, National
Autistic Society and the British Red Cross.
Everyone uses aids and equipment to make their
lives easier. For disabled children and their
carers, aids are vital to make daily activities
possible and to give them greater independence.
A third of parents with a severely disabled child
under two years use more than three pieces of
equipment daily to provide basic care (e.g. bath
and bed adaptations).47 Having the right
equipment can also be about human dignity.
Equipment required to enhance independence
or meet care needs is usually the responsibility
of social services.* This can include aids and
equipment to help with lifting and transfer,
personal care, eating, bathing and washing.
Need for equipment is usually identified by a
social worker who refers the case to an
occupational therapist (OT) for assessment.
Equipment is usually provided on a long-term
loan basis. Support provided by OT or social
workers may include practical tips and advice on
daily living.
Photograph supplied by Merseyside Access to Play
Equipment
What the government is doing?
* This includes help with arranging adaptations to the home or any additional facilities to secure greater safety, comfort and convenience. Adaptations are covered in the
‘Housing and adaptations’ section in Section 2.
21
Ordinary lives
Children
Health visitors, district nurses or social workers
can provide advice on incontinence and most
health authorities have designated incontinence
advisors. Once children are past infancy, the
health authority can provide incontinence aids,
such as bedding protection, disposable nappies,
catheters, pants and odour controls. However,
some authorities charge for these items.
Aids and equipment for nursing and medical
care at home, such as special beds and bed
equipment, hoists, incontinence aids, feeding
aids and mobility aids, are usually the
responsibility of the local NHS Primary Care
Trust (PCT). Equipment can be supplied by the
NHS on a free loan basis, with items being
prescribed by a GP or consultant and/or on the
basis of an OT assessment.48 Where equipment
is needed for social and medical care, in theory,
a joint assessment should be carried out by
relevant professionals.
Delays in the
provision of
essential
equipment
impede
children’s
development.
Equipment for children with impaired hearing,
such as hearing aids, are normally provided,
supplied and fitted by the NHS. Children are
referred to an audiologist by their GP or picked
up by the newborn hearing screening
programme. Some parents may prefer to
purchase hearing aids privately, but the cost can
be prohibitive; modern digital hearing aids cost
up to £2000 each.49 Aids for children with visual
impairments, such as magnifiers or more
complex appliances can be prescribed by the
NHS. There is also a range of ‘environmental
aids’ to promote independence for hearing or
visually impaired children, such as vibrating
alarm clocks.
‘
You are on a
waiting list. You
get [the
equipment]. It’s
wrong. You
send it back.
You go back on
the list. By the
time the right
thing’s come, his
needs have
changed. Parent
‘
22
6
Mobility needs are normally assessed by a
physiotherapist via GP referral. The local hospital
or community health service can loan basic
walking aids. The local NHS wheelchair service
provides wheelchairs (electric or manual). It can
also supply children’s buggies. These services
should help families choose a suitable
wheelchair to meet their needs, including extra
items such as cushions, rests and trays. They
are also responsible for maintenance and
repairs. Wheelchairs are only supplied to children
who need a chair permanently. Theoretically, the
NHS wheelchair service can supply any
wheelchair. In reality, this depends on local
criteria, available resources and the
circumstances of the child and family. Families
usually have to buy outdoor electric wheelchairs,
scooters or specialist sports chairs which can be
extremely costly. The average cost of
wheelchairs supplied by the charity Whizz-Kidz
in 2004 was £6,174, ranging between £1,162
and £17,400.50
Evidence shows that the system of assessing
and providing disabled children and their families
with the equipment they need to help them go
about their daily lives at home, school and in the
community is not working. In a recent review of
services, the Audit Commission found that
disabled children and their families face many
problems in accessing basic equipment.6 They
found problems such as:
• inflexible services
• inappropriate equipment
• additional costs to families
• confused eligibility criteria
• shortage of professionals
• waiting lists
Local authorities have different rules governing
distribution of this equipment; families frequently
do not know what is available. The variety of
providers of equipment means it can be difficult
for parents, or even professionals, to have a
clear understanding of who should provide what.
Different providers often wrangle over whose
responsibility it is to provide certain equipment.
Delays in the provision of essential equipment
impede children’s development, constrain their
ability to participate and cause stress for
parents. Sometimes children have outgrown the
equipment by the time it arrives — a total waste
of money. In 1995, research by the University of
York showed that the lives of at least 70,000
disabled children would be significantly improved
by the provision of a customised wheelchair or
other type of mobility equipment.51 It is not
obvious that matters have materially improved
since then.
‘You can have a bed that goes up and down if
you don’t have a hoist...so because we had a
hoist we couldn’t have one. So I said, couldn’t
you let me have a broken one, one that’s stuck,
because I don’t need down, I just need up? And
somebody said, ‘Oh yes you can have one’. But
then it came back, ‘no…you can’t have one. It’s
not social services who supply the beds, it’s
nursing something’…. But in the end they sent
us bed raisers.’
Parent 6
Ordinary lives
Children
Box 7: Common symbols from the Makaton symbol communication systems52
to break
to write
we/us
Communication
Transport
Speech, language and occupational therapy are
necessary to help some children communicate
and learn to use equipment. Therapy is vital to
help children participate in daily life and
communicate their thoughts, ideas and feelings.
Severely disabled children may need extra support
to help them express their likes and dislikes.
Disabled children and their families face
difficulties in accessing transport; this contributes
to their social exclusion. Public transport is often
physically inaccessible for disabled children. For
example, although 90% of London buses are
now accessible, the national average is only
around 30%.53 Public attitudes and ignorance
may make children feel uncomfortable even if
they can physically access public transport.29
Public transport will never fulfil all transport
needs, especially for children who are ill. Families
with disabled children who don’t have a car are
often heavily reliant on taxis — an expensive way
to travel. Transport needs are often omitted from
needs assessments and local authorities are not
obliged to provide free school transport for
children. Even when transport is provided, it is
often inflexible and limits children’s freedom to
visit friends or attend clubs after school.
A speech and language therapist normally
assesses a child and recommends equipment to
help communication. Following assessment, a
therapist may be able to loan the required
equipment. Speech and language therapy is
often regarded as educational provision and may
therefore be identified in a child’s statement of
educational needs and funded by local
education or health authorities. Parents can refer
their child to a speech and language therapist.
Some schools arrange for an occupational
therapist to assess the child’s needs and provide
equipment for use at home and school.
In many cases, local education authorities or
schools supply aids for use only in the school.
This means that when these children go home
they cannot take the equipment with them and
may be unable to communicate with their
families. For example, this may apply to symbol
communication systems. Symbol systems
augment language and literacy, and can often be
vital learning and communication tools for
students with physical and communication
difficulties (see Box 7). If parents are not trained
to use communication systems that their
children use at school, it leaves families unable
to communicate effectively at home.
The Audit Commission research revealed that
services, such as speech and language therapy
and physiotherapy, also had strict eligibility criteria
as a result of limited budgets, national shortages
of trained professionals and long waiting lists.
Inconsistencies in the way services were accessed
(e.g. referral procedures) prevented people
accessing therapy services. Even those families
who were assessed as being eligible for services
faced unacceptable waits. The research found that
waiting for a speech and language assessment
can take one year, and waiting for therapy can
take another. This means that children are of
school age before getting therapy. Their whole
school experience is likely to be harmed.
‘
I can’t always
do the things I
like, because I
always need
someone with
me and I don’t
have transport.
‘
to read
Disabled young person 45
‘Attempting to travel by train is a real nightmare:
getting him on and off trains; flights of stairs and
having to leave the wheelchair in the guard’s van
and carry our 12 year old for the journey.’
Parent 38
What is the government doing?
There are four key policy initiatives aimed at
improving specialist equipment and
communication services:
• Integrated Community Equipment
Services implemented by the Department
of Health (DoH).
• Communication Aids Project established
by the Department for Education and Skills
(DfES).
• Standards for equipment and therapy
services included in the Children’s National
Service Framework (NSF).*
• Prime Minister’s Strategy Unit
recommendations on equipment and therapy
services and individualised family budgets.
* The National Service Framework (NSF) for Children, Young People and Maternity Services is a government document which sets out, for the first time, national
standards for children’s health and social care. Standard 8 deals specifically with disabled children.
23
Ordinary lives
Children
Responsibility for
provision of the
majority of
equipment and
therapy for
disabled children
lies in the
statutory sector.
Other initiatives and measures include:
What is the charitable sector doing?
• A voucher scheme which allows families to
pay the difference between the wheelchair
available on the NHS and a more expensive
one of their choice.
The government is responsible for providing the
majority of equipment and communication
therapy services. However, not all children are
getting what they need when they need it, or are
able to take maximum advantage of available
technology. Charities have many opportunities to
improve the situation in the long-term through
lobbying. They can also support families in the
short-term, until government services improve.
Charities can use private funding to meet
equipment and communication needs in a
variety of ways:
• Children who receive the higher rate of Disability
Living Allowance (DLA) mobility component can
join the Motability Scheme. Motability is
operated by an independent not-for-profit
company, and enables people to use their DLA
to finance the purchase of mobility equipment
including wheelchairs, scooters and cars.
• The Government funded FF also provides
grants for families of disabled children to
purchase everyday items such as furniture,
bedding and white goods. These may be
needed because of the child’s disability, but
are not provided by statutory services. Items
of equipment purchased solely for use by a
disabled person are zero VAT rated, which
can also help to reduce the cost.
• Information and signposting.
• Help with cost.
• Loaning or providing equipment.
• Providing therapy and communication tools.
• Training of children, parents and carers in use
of equipment.
• Working with professionals.
These initiatives are welcome responses to
problems with the provision of equipment and
communication services. However, further
measures are needed if disabled children and
their families are to get the correct equipment
and support at the right time, sparing the pain
and anguish of delays, poor services and
inappropriate equipment.
Public transport needs to be accessible and
more affordable for disabled people. The DDA
should help to improve accessibility of transport
services. Staff would also benefit from disability
awareness training. Disability benefits paid to
families should reflect their higher transport
costs. Assessments of children’s needs should
take into account transport needs, to ensure
flexible and appropriate provision.
The Children’s
Society has a
range of child
advocacy
projects around
the country that
help disabled
children
communicate
their ideas.
24
In summary, responsibility for provision of the
majority of equipment and therapy for disabled
children lies in the statutory sector. However,
evidence suggests that services are often poor.
Many children and families struggle to cope with
inadequate or outdated equipment, or are waiting
to receive vital aids. Technology advances quickly;
there is always new or more advanced equipment
that children could benefit from, but which is
unavailable from statutory sources. Families face a
stark choice between doing without, or
purchasing equipment out of their own pockets.
For many, high costs and low incomes mean this
is not an option. Even those who can afford
equipment may be faced with a bewildering array
of products and a lack of expert advice. This
means that many disabled children are prevented
from participating in daily activities, developing
and enjoying independence as fully as they could
with the right equipment. Carers have to struggle
to provide care with inadequate equipment.
Insufficient speech and language therapy leaves
many children unable to communicate effectively,
making them frustrated and slowing development.
• Lobbying government.
Afasic supports families and professionals on all
aspects of communication difficulties, including
information via a website and helpline.
The Children’s Society has a range of child
advocacy projects around the country that help
disabled children communicate their ideas. This
can be about something like what they prefer to
eat or more important issues such as choice of
school. They also train professionals to be able
to better understand and work with disabled
children in planning and delivery of care.
The British Red Cross has a network of
medical loan depots. These can lend aids and
equipment, including wheelchairs.
Whizz-Kidz can provide customised mobility
equipment (wheelchairs and tricycles) that is not
available from the NHS. It also provides training,
advice and information. The Association of
Wheelchair Children provides free training,
assessments and advice to help children and
young people get the most out of their mobility
equipment.
The National Deaf Children’s Society provides
advice and information on all aspects of childhood
deafness. It also has a free equipment loan service
and fund. The National Blind Children’s Society
provides assessments, advice, installation and
technical support on computer hardware and
software for visually impaired children to
individuals, local education authorities (LEAs) and
schools.
Ordinary lives
The Disabled Living Centres Council is an
umbrella body for disabled living and
independent living centres. Disabled living
centres provide free, unbiased advice on a large
range of products and equipment to disabled
people of all ages through a network of
showrooms. The Disabled Living Foundation is
a charity that provides free advice and
information on equipment and assistive
technology for independent living to disabled
people, carers and professionals. It also has a
database of equipment.
Section 3 examines further how private funding
can help charities improve statutory equipment
and therapy services through lobbying.
Education
All children need education to help them achieve
their potential; this is particularly the case for
disabled children who may need extra support
to reach their goals. There is substantial overlap
between issues regarding disabled children in
education and the field of special educational
needs (SEN). The NPC report Making Sense of
SEN (2004) explores the range of issues, as well
as government and charitable sector activities
relating to SEN in detail. The main findings were:
• 1.8 million children in the UK need help
because they may have physical, learning,
behavioural or social difficulties.
• Many of these children do not receive
adequate support. Provision is heavily
fragmented and the government’s strongly
stated commitment to SEN is not translated
into practice.
Children
• Assessment of children’s needs is highly
variable and the process of gaining provision
from LEAs is often a major battle for parents.
The charitable sector plays a key role in
supporting parents and improving this process.
• NPC recommends funding organisations and
activities that can leverage the state’s
resources, enhance capacity of schools to
deliver education, improve teaching methods
for SEN children, and support parents.
This report presents a brief overview of key
issues in education for disabled children.
What is the government doing?
Pre-school children
Effective early intervention improves children’s
health and social and cognitive development. It
can also tackle some of the social and physical
barriers faced by disabled children.54 Delaying
intervention results in irretrievable loss of function
or ability (e.g. ability to maintain posture), or
reduced effectiveness of the intervention (e.g.
speech and language therapy).47 The
government has recognised this in a number of
policy initiatives to support all young children
(e.g. Sure Start) and those with disabilities (e.g.
Children’s NSF). In 2003, the DfES and DoH
issued a guidance document, ’Together from the
start’, for professionals working with very young
(0–3 years) disabled children. The Early Support
Programme is charged with delivering the
recommendations laid out in ‘Together from the
start’. It is developing and evaluating key
workers (see Section 3) and family service plans.
It provides a range of user-friendly materials for
parents and professionals.
Photograph supplied by Circles Network
• Including children with SEN in mainstream
schools has created tension in the education
system. The charitable sector can play a key
role in transferring knowledge from specialist
schools to mainstream settings.
25
Ordinary lives
Children
There are 1,100
special schools in
England
educating 86,000
pupils.
LEAs also fund provision of Portage services.
Portage is a home-based, early-years
educational programme for disabled children or
children with development delay. The training
supports the development of young children’s
play, communication and relationships. It enables
them to participate in everyday life and be fully
included in mainstream society. It emphasises a
positive approach and builds on what children
can do, so that they and their parents can
celebrate achievement. A key principal of
Portage is that parents are recognised as the
most important people in the care and
development of their child.
School age children
The government is responsible for providing
education for all school age children. The vast
majority of children in England with SEN are
educated by the state. Most are educated in
mainstream schools, but a number are educated
in the almost 1,100 special schools in England
(86,000 pupils, or 34% of statemented
children).55 There are three main types:
• State maintained special schools are
operated by the state and maintained either
by the LEA or by a grant from the DfES.
• Non-maintained schools are not-for-profit
schools run by charities and funded primarily
through pupil fees paid by the LEA (therefore
indirectly funded from the public purse). There
are 63 non-maintained special schools, which
typically provide for children with severe
and/or low incidence difficulties.
The ideal situation
for children and
their parents is to
have a choice of
high quality
mainstream and
specialist
schools.
• Independent schools are wholly funded by
pupil fees and can be run on a profit-making
basis (although most schools for disabled
children are not-for-profit). At present, 247
independent schools cater ‘wholly or mainly’
for children with SEN.55
Providing education for children with severe
disabilities can be extremely expensive. In one
residential school visited by NPC the cost for 48
weeks of education ranged from
£95,000–£100,000 per child. Costs for
residential special school places are around
three times higher than costs for providing for
similar needs in a day special school.47
The government has recognised the need to
improve education for disabled children in an
inclusive (mainstream) setting in a number of
policy initiatives. In February 2004, it launched a
SEN Strategy.56 This sets out the approach to
supporting education of children with SEN. The
Children’s NSF is designed to reinforce the SEN
strategy and promotes a multi-agency approach
by education, health and social services to
provide a package of services designed around
the child (see Section 3). The Disability
Discrimination Act (1995), as amended by the
Special Educational Needs and Disability Act
(2001), has made it unlawful for schools and
LEAs to discriminate against disabled pupils.
26
The government has funded a range of initiatives
in response to this.
• The Accessibility Planning Project (APP)
promotes effective practice in the
development, implementation and evaluation
of accessibility strategies in schools. It is
funded by the DfES and carried out by the
charity Council for Disabled Children (CDC)
and the Special Educational Needs Joint
Initiative on Training (SENJIT) at the University
of London.
• The Reasonable Adjustments Project
(RAP) is producing a practical guide for
teachers to help them make reasonable
adjustments for their disabled pupils and
prospective pupils. The DfES and the
Disability Rights Commission commissioned
the project, which is being carried out by the
charity Disability Equality in Education.
• Schools Access Initiative (SAI) provides
funding to make mainstream schools more
accessible to disabled children. It funds: the
installation of lifts, stair lifts, ramps and
disabled toilets to help physically impaired
children; the carpeting and acoustic tiling of
classrooms to benefit hearing impaired pupils;
and the provision of blinds and paint
schemes to benefit visually impaired children.
The DfES is giving £100 million to LEAs in
2004–2005 and 2005–2006 for the SAI.
• Parent Parnership Services have been
introduced in every local authority to support
parents of children with SEN. They develop
networks between parents, schools and
education authorities.
Mainstream versus specialist educational
provision
Disabled children must be assessed before their
LEA will pay for and provide additional support in
a mainstream school or a place in a special
school. The assessment may result in the child
being issued with a statement of SEN. This
details the child’s educational (and other) needs
and, once finalised, the school to be attended.
There are many problems with the statementing
process. It can be a long and drawn out struggle
between parents and LEAs, involving appeals
and legal wrangling. However, getting a
statement can be only half of the battle. Parents
may have to continue fighting to obtain the
services their children are entitled to.
There is a long-running debate regarding the
relative merits of mainstream versus specialist
education for disabled children and children with
SEN. The current trend is for increased inclusion of
disabled children in mainstream educational
settings. For many disabled children, mainstream
education may be the best option. However,
educating them in mainstream schools is not
without its problems. Children may not get the
services that their statement of SEN stipulates.
They may be isolated educationally and socially
Ordinary lives
Some parents and children may feel that even if
a mainstream option is available it will not
provide the best possible education for them, for
social or educational reasons. There are some
disabled children, in particular those with
complex or additional needs, such as
technology-dependent children, for whom
education in a special school environment is
likely to be the best option.
For such a large group of children with their broad
range of needs, there is no clear solution to the
question of mainstream versus specialist
education. The ideal situation for children and their
parents is to have a choice of high quality
mainstream and specialist schools; so that they
can decide which setting is best for them. There is
no evidence relating to the performance of disabled
children in mainstream versus specialist schools.
This means that an informed choice on the basis of
educational performance of disabled children is not
possible. Data on (mainstream) school
performance is at present limited to threshold
measures of the percentage of pupils achieving a
minimum level of qualifications. For many disabled
children (or children with SEN) these are not
attainable; such measures create a perverse
incentive for schools either to avoid accepting
disabled pupils or to devote limited resources to
them. In some specialist schools, such as St
Margaret’s at The Children’s Trust, a child’s
progress is measured against individual learning
objectives developed within its own curriculum.
What is the charitable sector doing?
Charities play a key role in the development and
delivery of services for pre-school disabled
children. They support parents by guiding them
through the complex and often conflicting
information given by professionals.
Scope has worked with parents to develop
guidelines to help professionals deliver news of a
child’s special needs to parents. The
government has adopted the ‘Right from the
start’ template as part of its ‘Together from the
start’ guidance and the Children’s NSF.
The National Deaf Children’s Society produced
a comprehensive guide on childhood deafness,
funded by the DfES. It gives unbiased information
on the merits of learning sign language or
learning to lip read — parents are often given
contradictory information about this subject.
The National Autistic Society (NAS) developed
early intervention advice through the Early Bird
Scheme, a course designed to give parents
more control over their lives by providing an
understanding of autism and its impact on their
child. It enables parents to help children early,
thus avoiding challenging behaviour later. The
NAS retains ownership of the scheme to ensure
‘
‘
within the mainstream school or subject to
bullying. Some children are prevented from going
to their chosen mainstream school because of
problems with physical access or the environment.
Children
Coming to Atlantic College means that I get
some freedom and a rest from my mum ...
I get to meet new friends with the same
Disabled young person
problems I have.
36
quality control and franchises it out to LEAs. It is
funded mainly by LEAs, but occasionally by
parents. It involves ten weekly sessions, followed
by at-home support. Barnardo’s delivers the
Early Bird Scheme in some areas.
Kids, The Children’s Society and other
voluntary organisations deliver Portage services
on a contract basis for local authorities. Delivery
of Portage at home is generally funded on a fee
per service or contract basis with local
authorities. However, there are often long waiting
lists or rationing of services; authorities often do
not cover the full costs of provision. Donations
given to organisations delivering Portage are
unlikely to purchase more Portage services for
children, but instead may be used to top-up
local authorities’ contributions or pay
management costs. It may be used to share
best practice between Portage services
operating in different areas. This does not mean
that donors and funders should not give money
to charities that deliver Portage services, but
they should not think that these funds will be
used to purchase additional services (this is also
true for short breaks, see Section 2).
Mencap is leading a feasibility study
commissioned by the DfES. This considers a
national centre for early intervention that could
provide information and publish research on
what works, develop courses and training and
publish key research messages.
Funding school-age education of disabled
children is the responsibility of the statutory
sector. However, the charitable sector plays a
number of important roles from curriculum
development to service delivery.
The National
Autistic Society
provides early
intervention
advice through
the Early Bird
Scheme.
Statutory sources should fully fund individual
places for disabled children at schools. However,
there are a number of instances where charitable
income can improve or expand the education
services on offer for disabled children. Many
special schools run by charities or trusts provide
services above and beyond those that could
reasonably be funded by LEAs. They require
income to fund these additional services.
Schools may also find it difficult to expand
services or capacity. Therefore, voluntary income
is important for capital expansion (buildings) and
also to pioneer new services.
27
Ordinary lives
Children
Special schools run by charities play a key role in
developing the curriculum and learning materials
for disabled children.
Special schools run by charities often play a key
role in developing the curriculum or learning
materials for disabled children. For example, the
National Autistic Society runs six specialist
schools and ensures that lessons learnt on how
best to educate autistic children are transferred
to mainstream schools.
The voluntary sector is also working to support
disabled children in mainstream educational
settings. For example the National Blind
Children’s Society has developed national
curriculum materials and revision guides for
partially sighted children. The National Deaf
Children’s Society has developed a ‘deaf
friendly’ pledge to help schools make provision
more accessible for children with impaired
hearing. They have also carried out work on
bullying in schools; it wants to expand this and
focus on disabled children.
Contact a Family advises on a wide range of
educational issues; they also provide vital
signposting to local Parent Partnership Services.
The Council for Disabled Children works with
LEAs to improve education services for disabled
children. It also houses the Special Educational
Consortium (SEC) and the National Parent
Partnership Network (NPPN). SEC protects
and promotes the interests of children with SEN
and disabilities when there are proposals for
changes in legislation, regulations or guidance.
NPPN is the umbrella group for local Parent
Partnership Services.
What are the outcomes of improving
education for disabled children?
The main result of charitable activity in the
education of disabled children is an
improvement in the quality of education
provided. Charities can ensure that the
curriculum is more accessible and appropriate
for disabled children. This allows children to
achieve their potential. Charities also provide
high quality specialist education places at
independent or non-maintained schools. Even
where LEAs fund individual child placements,
charities often top up to ensure additional
activities or facilities are available. This results in
improved educational outcomes for disabled
children. Better education leads to increased
social inclusion of disabled people into the
workplace and community.
28
Section summary: children
Disabled children have the same needs as their
non-disabled peers: to have fun, make friends,
play and go on holiday. However, many barriers
prevent them from doing these things. Lack of
accessible leisure faciliteies that can cope with
additional needs, means there are fewer social
opportunities for disabled children. Being in a
school far away from home makes it difficult for
them to see friends. Public attitudes make
disabled children feel uncomfortable when they
do go out. Financial constraints and poor
transport also limit opportunities for holidays and
outings. Many disabled children do not get the
equipment, therapy or communication aids they
require. This can slow their development and
limit their capacity to participate in their school,
home and social lives. Disabled children often
have a poor experience of education and
parents have to fight for services.
Recent legislation, such as the DDA, should
improve access to transport and leisure facilities
for disabled children. Some additional statutory
funding is earmarked for improving inclusive
leisure services. The FF provides holiday grants,
but often this money is needed for basic items,
such as washing machines, so families do not
get a holiday. Efforts are being made to improve
equipment services and ‘join up’ the different
local authority departments responsible for
equipment and therapy services. The
government also has a strategy to improve
education for children with special needs. In
spite of these efforts, the pace of change is slow
and statutory services are failing to meet the
needs of disabled children.
There is a clear role for charities to push for an
accelerated pace of change, lobbying with and
on behalf of disabled children. They can also
develop and share best practice in meeting the
needs of disabled children. Simple things are
extremely important to children. Charities
recognise this. For example, they support
disabled children to make friends, provide
opportunities for them to interact with nondisabled peers, and build confidence by letting
them experience new and exciting places and
activities. Supporting charities to do these things
will help ensure that disabled children, now and
in future, are allowed, simply, to be children.
There is a clear role for
charities to push for an
accelerated pace of change,
lobbying with and on behalf
of disabled children.
2
Families
astonishing one third of lone parents had at least
one child with a long term illness or disability.60
Contact a Family found that 44% of parents felt
that having a disabled child had caused
relationship problems. An additional 9% said that
having a disabled child had led directly to
separation. The survey found that 17% of
respondents were bringing up a child on their
own.57
Raising a disabled child has a profound impact
on a family. For some, the experience brings
them closer together, but it can also lead to
relationship, financial, physical and psychological
strains. A Contact a Family survey of over 2,000
parents with disabled children found that 76%
suffered stress or depression, 72% experienced
tiredness or lack of sleep, 51% had financial
difficulties, 32% had problems at work and 22%
had housing problems.57 This section explores
these issues and what the government and the
charitable sectors are doing to help.
‘Having a child with disabilities is shattering, it
changes your life. My husband and I split up last
year. It gets to the point that it is too painful to
talk about your child so you stop talking to each
other completely.’
Parent 61
Families with
disabled children
Disability cuts across gender, ethnicity,
geography and socio-economic class.* The
families of disabled children are extremely varied
in terms of demographics. What links them
together is the life-changing event of having a
child diagnosed with an impairment. Although
family experiences will be highly individual, there
are some common threads. It is important to
note that while all families have similar needs in
varying degrees, some groups have greater
needs overall.
†
Single parents are one such group. Single parent
families are more common when there is a
disabled child, indicating the strain on marriage
from caring for a disabled child. In a
representative sample of 7,070 British families in
2002, 31% supporting a disabled child were
lone parent families.11 This compares to 24%
among other families. Put another way, 20% of
all lone parent families are supporting a disabled
child compared with 14% of couple families.11
A different sample of over 5,000 British lowincome families in 1999, found that an
31% of families supporting a
disabled child are lone
parent families.
Having more than one disabled child places
additional strain on the family. An analysis of the
Family Fund (FF) database in 1997 found that
around 17,000 families in the UK have more
than one disabled child and 7,500 of these have
two or more children with severe impairments.62
Barnardo’s estimates that 10% of families with
disabled children care for more than one
disabled child.39 These families are more likely to
be single parent families, less likely to be in
work, less likely to be in their own homes and
more likely to be dependent on income
support.63 Additionally, in families with two or
more disabled children, the whole family is
involved in providing care and support, including
disabled children and their non-disabled siblings.
The whole family is isolated and has a restricted
life.62 The needs of these children and their
families vary from those of households with one
disabled child.
‘
We are a
disabled family,
we don’t just
have a disabled
child — it
impacts on
every single
aspect of our
Parent
lives.
‘
This section sets out the financial, practical
and emotional burdens of raising a disabled
child. The government could do more to
relieve these burdens and, particularly to lift
families out of poverty. While not a truism, it
is usually the case that a family with a
disabled child is poor. Increased national and
local advocacy is needed to accelerate
government action.
58
‘They [families] shouldn’t have to fight for
everything – but they have to. And it’s harder to
battle for two than it is for one.’
Community Nurse 62
Another group of families with additional needs
are those where one or both of the parents is
disabled. Disabled parents need extra support to
bring up a child. There is little information on the
number of such families or the type of additional
support they require. What is known is that
children in families with both a disabled adult
and a disabled child are particularly at risk of
poverty. Roughly two-thirds of this group are in
the bottom two quintiles of income distribution.64
* Although the Health Survey for England in 2002 found that children from lower income households are more likely to report long standing illness or disability this is a
two-way relationship (as discussed in Section 1).59 Lower birth weights in lower-income households may lead to an increased incidence of disability. However, child
disability invariably leads to lower income and additional expenditure.
†
Our use of the term ‘family’ includes (unpaid) carers and siblings of disabled children.
29
Ordinary lives
Families
Black and
Minority Ethnic
families with
disabled children
have a high level
of unmet need.
Black and Minority Ethnic (BME) families also
have a high level of unmet need. Parents in this
group report language, communication and
information barriers to accessing services.
Services may be inappropriate because of
insensitivity to religious and cultural needs, such
as diet and preference for care in the home,
rather than outside of it.6, 65 This results in a lower
take-up of services and benefits. The Audit
Commission confirmed that this group were
disadvantaged in comparison with their peers.6
‘The main problem faced as a Muslim was that I
was expected to adapt to services and cultural
needs were not dealt with… Often I felt inferior
because we didn’t do things their way.’
Parent 65
Family needs
Financial support
What is the situation?
Extra costs
The Centre for Research in Social Policy found
that it cost an average of £8,300* a year to bring
up a severely disabled child. The minimum
essential budget from birth to age 17 is
approximately £143,000 with the largest
proportion being spent on transport. This is at
least three times more than the amount required
to raise a child without a disability.66 The
additional cost includes expenditure on trips to
the hospital, heating, housing, clothing, bedding,
laundry, equipment and housing adaptations. A
recent pilot study on the costs of autism
concluded that families incur additional
expenditure of at least £66 per week.** 67 Of this,
40% is spent on extra help, 22% on special
food, clothes, damages and extra laundry, and,
14% on additional transport. The remainder
goes on special activities, therapy, education,
legal costs and extra costs for siblings. Another
recent study reported that families require an
extra £105 per week over and above their
current incomes to meet their child’s needs
satisfactorily.68
†
Figure 7: The financial equation of families with a disabled child
Extra costs
3 times the
cost of raising a
non-disabled
child
+
Inability to
work
Only 16% of
mothers in fullor part-time
employment
=
Poverty
55% of families
with a disabled
child live in
poverty
+
Debt
84% of families
with a disabled
child are in
debt
‘It’s all the little things, the extra clothes, sheets,
even food that you’re buying every week and you
don’t realise what it costs or rather it would scare
you if you sat down and worked it out, so you
don’t. Every now and again I’ll think I’ll get myself
some new clothes because mine are almost in
holes, but I come home with things for Erin,
because she needs it more than me. And just
when you think that you might be getting straight,
it all falls apart, she’ll have a bad patch and maybe
she’ll need a new bed or she’s back in hospital
and that costs. The thing you have to realise is
that everything like this is a disaster for us.’
Parent 66
Although the FF is unable to provide grants for
services or items which should be provided by
the government (such as wheelchairs and short
break services) a review of their disbursements is
indicative of some of the needs of families with
disabled children. In 2003–2004, the fund
distributed 103,305 items to 41,634 families.
The breakdown of items is shown in Figure 8.15
In one year alone, it disbursed funds for 14,382
washing machines! One study found that
parents did 14 washes a week for a child with a
severe disability, compared with only two for
non-disabled children.66
‘When my son was poorly, he wet the bed five
times and that was five pairs of pyjamas and five
sets of bedding just in one night.’
Parent 66
It costs three
times more to
raise a disabled
child than to raise
a non-disabled
child.
* This has been calculated by adjusting the 1997 figure of £7,355 by the consumers’ expenditure deflator to arrive at the 2004 figure of £8,333.
† This has been calculated by adjusting the 1997 figure of £125,000 by the consumers’ expenditure deflator to arrive at the 2004 figure of £141,625.
** This study involved 15 parents with 17 children. It used a diary survey over 14 days to estimate the parental time spent and costs incurred.
30
Ordinary lives
Families
Outdoor play
equipment 1,799
Hospital visiting 2,233
Driving lessons 2,270
Other
5,850
Recreation general 3,249
Fares/outings 4,121
Holiday 33,964
Furniture 4,591
Over 80% of
disabled children’s
mothers are
unemployed.
Bedding 14,315
Clothing/
footwear 16,521
Figure 8: Family
Fund Grant Items
(2003–2004)
All white
goods 14,392
Only one study has attempted to measure the
economic impact of disability on society. This
study considered the costs for service use
(including hospital, other health and social
services, living support, special education, day
care provision, and medication), time and
productivity, and family expenses of an autistic
person. It concluded that the overall cost of autism
in the UK exceeds £1 billion per year (based on an
assumed prevalence of five cases per 10,000).
The lifetime costs for a person with autism were
found to exceed £2.4 million. The costs of living
support and day activities account for almost 90%
of this cost.69 Legal compensation awards provide
an alternative financial estimate of the cost of
disability (see Box 8).
Inability to work
On top of the additional expenditure described
above, most carers of disabled children are unable
to work because of intensive care requirements
and the lack of, or prohibitive cost of, appropriate
childcare. Families supporting a disabled child are
2.5 times more likely to have no parent working for
more than 16 hours per week (32%, compared
with 16% of other families).11 Analysis of 2002 FF
data shows that only 16% of disabled children’s
mothers work full or part-time15, compared with
61% of all mothers (from the General Household
Survey 2002).21 The inability to work is
compounded by the higher rate of lone parents
among families with a disabled child. Analysis of
single parent applicants to the FF, found that
82.7% were unemployed. This compares to 2001
Census estimates that 51.3% of all single parents
are not employed.21 In fact, 35% of non-working
single parents have a disabled child.60
‘You can’t work when you’ve got a child like
ours, it’s just not possible. I tried and you always
need time off when they’re ill and they’re ill more
than normal children, then you’ve got all the
appointments as well. But the killer is the
holidays, what do you do with them then?’
Parent 66
‘There is added stress when you have to fight
for your rights. If services were easy to get we
wouldn’t have to type out loads of letters, fill in
forms. Try doing this and keeping a full-time job
going, I feel I have to stay at home to fight for
our rights.’
Parent 72
The ability to work is further restricted in families
with two or more disabled children. One small
study found that in only one third of these
families was either parent employed, although
virtually all of the parents said they would like to
work. Loss of benefits often means low-paid
work is not financially worthwhile. In some
families the fathers had given up work to help
provide care.62
Box 8: £3.9 million lifelong care costs
Two recent high court cases have awarded over £3.8 million each in compensation to
individuals who became brain-damaged due to hospital negligence.
In the first case, Lewis Prosser, now aged seven and with severe cerebral palsy, was
awarded £3.85 million in damages because of failings in the care of his mother’s
pregnancy, labour and his birth. According to the Prossers’ solicitor, the damages award
was mostly made up of the cost of essential lifelong care for Lewis.70
The second case awarded Claire McEvoy £3.9 million. She is now aged 20 and has
impaired intellectual and communication skills and mobility problems. She contracted
listeria on a post-natal ward which led to hydrocephalus (water on the brain) which
went un-diagnosed for two years.71
31
Ordinary lives
Families
At least 55% of families with a disabled
child live in poverty.
Poverty
The additional expenditure combined with lower
income-earning capacity of families with a
disabled child results in poverty for many. Based
on an analysis of government data, 55% of
families with a disabled child were living in, or on
the margins of, poverty in 1985.*12 Households
with disabled children were four times more likely
to be living in poverty. A more recent study found
that families with a disabled child were more than
twice as likely than other families to be unable to
afford five or more everyday items.11 Many
experts consider even these startling figures
to be underestimates.
84% of families
with disabled
children are in
debt. This
compares to 47%
of all households.
Income figures do not give a full picture of
poverty levels because they do not take into
account additional expenditure. However, they
do shed some light on the earning capacity of
households with disabled children. Recent
Department for Work and Pensions (DWP)
figures show that there are almost three times as
many families with disabled children in the
lowest income quintile as in the top quintile.64
Using a standard income measure of poverty
(60% below the median income level after
housing costs), 29% of people with one or more
disabled children in the household live in poverty,
compared with 21% in households with no
disabled children.64
The Government’s Social Exclusion Unit states:
‘The single most important feature of the
experience of families with disabled children
remains poverty. Greater childcare costs and
lower parental incomes are strongly associated
with childhood disability73 […] Of adults with a
disability, 29% live in a low-income household,
compared with 22% of all individuals. For
households containing either a disabled adult or
child(ren), this rises to 43%.’ 74
The level of
benefit needs to
increase by 20 –
50% to meet the
additional costs
of raising a
disabled child.
Debt
Although there is evidence of higher expenditure,
lower incomes and higher likelihood of poverty
for families with disabled children, data about the
extent and nature of indebtedness among these
families has only recently been collected. In a
study commissioned by the Department of Trade
and Industry (DTI) in 2002, only 16% of families
with disabled children said that they had no
debt. This compared to 53% of all households
reporting no debts.75 Families with disabled
children were four times more likely to owe in
excess of £10,000 (16% as compared to 4%).75
In another recent survey of 1,843 families, only
6% reported they were ‘comfortably off’ with
93% reporting some form of financial difficultly. 76
Families from BME groups were slightly more
likely to be in financial difficulty. The survey also
found that 55% of families had not sought any
formal advice about their debt. Of those who
had, the majority agreed that it was hard to get
advice.76
†
Such high levels of debt, with no foreseeable
end, increase levels of stress, mental health
problems, relationship breakdowns and fear at
facing an uncertain future. Families with disabled
children are highly unlikely to break out of debt,
unless their incomes increase significantly.
‘You think it gets easier as they get older but it
doesn’t, the money still isn’t there and the debts
are bigger. I don’t worry about the bills now,
that’s the only difference. What are they going to
do to me, put me in prison? Great, a room to
myself and a night’s sleep. That would be the
first in nearly 15 years.’
Parent 66
‘We live with high debts as without this we
wouldn’t have furniture or days out with her. I
owe £6,000 on my credit card, which I have for
such a long time now, and I have a bank loan of
£10,000, which bought all our furniture, carpets,
clothes, toys and paid for the move.’
Parent 68
What is the government doing?
If the government is to reach its goal of halving
child poverty by 2010 and eradicating it by
2020, it must urgently target families with
disabled children.** The current government has
extended financial benefits for families, improved
the rights to flexible work and increased
childcare provision — but none of these
measures has been targeted specifically at this
group. Much more remains to be done for
families of disabled children before the goals
are realised.
Benefits
There are a number of tax credits, benefits and
grant programmes that provide financial
assistance to disabled children and their families.
These are summarised in Table 4.
The benefits system acknowledges that disabled
people and their families incur additional costs.
However, the level of benefit in no way meets
the additional costs. A 1998 study on the cost of
caring concludes that benefits would need to be
increased by 20–50% depending on the child’s
age and type of impairment.66 Similarly, the
charity Disability Alliance estimates levels would
need to increase by 30–50% to raise disabled
children out of poverty.21 The nominal rates of
DLA have been increasing at a rate of
* This study used the ‘consensual’ or ‘perceived deprivation’ approach to measuring poverty. Thus, it defined poverty from the standpoint of the public’s perception of
minimum need. Families suffering the enforced lack of three ‘necessities’ or more were considered to be ‘in poverty’.
†
1,007 of the families included in the survey were drawn from the FF database. As the FF only supports families with incomes below £23,500, this introduces downward
bias into the survey and results should be interpreted with caution.
** NPC analysis of DWP 2002/2003 data 64 suggests that as many as 14% of all children living in poverty live in a household with one or more disabled child.
32
Ordinary lives
Families
Table 4: Main benefits available to disabled children and their families
Category
Benefit
Description
Level*
Disabled
Child
Child Benefit
Paid by Inland Revenue to everyone
responsible for a child from birth up until
16 (19 if they stay in full-time education).
Not affected by income or savings.
£16.50 per week for
eldest child. £11.05
per week for every
other child.
Child Tax
Credit
(CTC)
Paid by Inland Revenue to people with
children subject to household income but
not dependent on parent’s employment
status. Made up of a family element and a
child element. Weekly supplement if child
gets DLA at any rate.
Up to £42.49 per
week for each
disabled child. A
further £17.08 for
each severely
disabled child.
Working Tax
Credit
(WTC)
Paid by Inland Revenue to the person who
is working 16 hours or more a week
depending on annual income and
circumstances. Childcare element of up to
80% of childcare costs as long as the care
is provided by an approved provider.
Childcare maximum
of £175 per week for
one child and £300
per week for two or
more children.
Child Trust
Fund
(CTF)
A savings and investment account for
every child born since September 2002
which can be accessed when child
reaches 18. Amount contributed by
government doubled for low income
families. Disabled CTF proposed but not
yet available.
Government
contributes £250 at
birth. Others can
contribute a total of
£1,200 per annum.
Disability
Living
Allowance
(DLA)
Introduced in April 1992, DLA is a noncontributory, non-income related, nontaxable weekly benefit paid by the DWP
for disabled people, including children.
If the government
is to reach its
goal of halving
child poverty by
2010 and
eradicating it by
2020, it must
urgently target
families with
disabled children.
Two components:
Help getting
around
Care component: 3 different rates — lower
(for extra help or supervision of at least an
hour a day), middle (extra help or
supervision frequently throughout day or
night) and higher (extra help or supervision
during the day and night). Claimed from 3
months or birth if child is terminally ill.
Lower: £15.55
Mobility component: 2 different rates —
lower (can walk but needs extra
supervision) and higher (can’t walk or is
physically hard for them). Higher rate
claimed from 3 years and lower rate from
5 years.
Lower: £15.55
Middle: £39.35
Higher: £58.80
Higher: £41.05
Freedom pass for child to travel free on
public transport.
Blue Badge to park closer to facilities if
child is over 2 years.
Motability Scheme helps to hire or buy a
car if child is on higher rate of DLA
mobility component.
Exemption from road tax if child is on
higher rate of DLA mobility component.
33
Ordinary lives
Families
Table 4: Continued
Category
Carer
Other
Benefit
Carers
Allowance
(CA)
Disability
Facilities
Grant
(DFG)
Social Fund
Description
Level*
Taxable weekly benefit for informal carers
over 16 years of age who spend at least
35 hours per week caring for someone
receiving DLA, earn less than £79 per
week and do not study for more than 21
hours per week.
£44.35
Means-tested grant towards the cost of
providing adaptations and facilities to
enable a disabled person to continue to
live in their home. An assessment of
needs is made, usually by an occupational
therapist from social services.
Maximum per person
of £25,000
Grants given to help people on low
income with specific payments including:
Various
(plus £26.50 for
dependant spouse)
• Maternity Grants
• Funeral Payments
• Cold Weather Payments
• Winter Fuel Payments
• Crisis Loans
• Budgeting Loans
• Community Care Grants (often awarded
to families with disabled children)
Family Fund
(FF)
Means-tested small grants for families of
disabled or seriously ill children under 16
years. In 2003/2004 the Family Fund
distributed £27.1 million to 41,634
families. All funding comes from the
government and cannot be used to fund
items which should be provided by
statutory authorities.
Average grant: £625
Family
Welfare
Association
(FWA)
Administers funds from over 70 trusts that
have very diverse eligibility criteria. Funds
items such as clothing, fuel bills, and
household needs, e.g. beds and cookers.
Applications must be made by a social
worker. FWA is unable to help with
anything already provided by the statutory
authorities.
Various
Low Income
benefits
Families may be entitled to a number of
benefits including Income Support (IS),
income-based Jobseeker’s Allowance
(JSA), Pension Credit, Housing Benefit
(HB) and Council Tax Benefit (CTB). A
carer premium is available on most of
these if CA is claimed.
Various
* These levels are a guide only and can be affected by a number of factors including any residential care of the child, income levels and other
benefits received.
34
Ordinary lives
approximately 2.5% since 1992. This is barely in
line with inflation.* Significantly, the higher rate of
DLA mobility component was extended to three
and four year olds in 2001, but many
organisations are still campaigning for higher
levels of DLA.
The benefit system fails to take into account the
cumulative costs of having more than one
disabled child. For example, where two children in
one family both fall outside the criteria for the care
component of the DLA, the family will receive no
award, despite the overall burden of care.
A further problem is that many families do not
receive the maximum benefits available because
of the difficulty in finding out about, and
claiming, benefits. As Table 4 illustrates, the
number of benefits, agencies that administer
them, eligibility criteria and claim processes are
complex (see Box 9). The form for claiming DLA
has 47 pages and many people find it hard to
complete, even with assistance. A Commons
Public Accounts Committee report found an
astonishing half of all decisions on DLA and
attendance allowance contained errors.78
One qualitative study found that the stigma and
shame of applying for benefits were also major
obstacles to claiming.79 Even when families
manage to secure DLA, the fact that it is
repeatedly downrated or withdrawn (after the
two to five year period for which it is granted),
generates considerable income fluctuations and
high levels of stress and ill health.79
In 1998, the government estimated that only
30–50% eligible people were taking-up the DLA
care component; for DLA mobility component
the take-up was 50–70%.81 In August 2004, only
271,000 children under the age of 16 were
receiving some level of DLA.77 This represents a
mere 39% of all disabled children. Take-up has
been increasing — but not at a high enough
rate. In the five years to February 2004, the
number of children receiving DLA increased by
30%.82 Of families applying to the FF for grants,
82% were receiving DLA and a further 12% had
pending applications. The majority (71%) were
receiving no DLA mobility component help.15
Data from the FF and the charitable sector
indicates a lower rate of take-up of disability
allowances among ethnic minority families.21, 65
‘I wish the government would provide us all with
one idiot-proof booklet, the easy guide to what
you’re entitled to.’
Parent 58
Families
The government has supported a number of
activities to raise awareness of DLA and increase
take-up. However, as the Social Exclusion Unit
states: ‘A number of positive changes to
benefits/tax credits have occurred since 1999.
However, improving the take-up of benefits,
especially Disability Living Allowance, remains a
challenge.’ 73 A national awareness campaign is
still required. DWP is at present improving the
claims process for disability benefits and
developing a new DLA form appropriate for
carers of disabled children. It is hoped that a
more personal and responsive service will
remove barriers and encourage people to claim.
DWP has commenced consultation with groups
representing disabled children and will be testing
the new forms in 2005.
In April 2004, 103,000 families were benefiting
from the additional support provided by the Child
Tax Credit (CTC) for disabled children. This is
more than three times the number of families
who benefited from the previous disabled child
credits.82 Entitlement to the disabled child
elements of CTC is based on DLA eligibility.
Contact a Family has received government
funding to increase take-up of the CTC and
Working Tax Credit (WTC). The FF also signposts
eligible parents to the relevant tax credits.
Removing barriers to employment
‘The government’s role is to support families and
ensure that they have meaningful choices about
how they live their lives. This means ensuring that
parents are able to spend time with their children,
particularly during the first year of life, enabling
flexible working, providing joined-up support and
guidance services and increasing availability of
high quality, affordable, flexible childcare provision.
It also means making sure the poorest and most
disadvantaged children and families have access
to the support they need.’ 83
Only 39% of
disabled children
are claiming
Disability Living
Allowance.
Box 9: The case of Ali Abbas
Ali Abbas, the 14 year old Iraqi orphan who lost both arms in the Iraq War in April 2003,
applied as a British resident to DWP for Disability Living Allowance in October 2004.
Although pictures of him crying in a Baghdad hospital were shown around the world,
he received a letter in March 2005 saying no backdated disability payments would be
provided. He could only receive benefits from March 21, 2005 because conditions set
by the DWP on his disability had not been satisfied for the prior period.
Zafar Khan, chairman of the Limbless Association, commented: ‘It’s appalling the way
he’s been treated. I am wondering how many other people like Ali are suffering through
this incompetence and negligence.’ Scope’s campaign officer added that the case was
’all too typical of the kind of red tape facing disabled people when they try to claim
what is their statutory right’. 80
Following exposure of his case in the media, Ali was given a formal government
apology and backdated payments.
* NPC analysis of DWP August 2004 DLA quarterly data.77
35
Ordinary lives
Families
The Employment Act (2002) has increased
parental rights at work. Parents with a disabled
child under 18 years now have the right to apply
for flexible working arrangements. Employers
have a duty to consider these requests seriously
and refuse only when there is a clear business
reason. A recent survey of over 900 parents by
Contact a Family found that there is still a
considerable lack of awareness among parents
about their new rights.72 Parents who have
successfully used their new rights to arrange
more flexible work reported major benefits.
National Audit Office report found that the
situation had improved, but disabled children still
get proportionately less childcare than other
groups. The difference was particularly marked in
childminder provision: only 10% of childminders
offer services for disabled children. School-based
provision is more widely available, but is limited in
terms of numbers.85 Furthermore, although 5% of
British children are disabled, only 2% of the
planned childcare places announced by the
government in July 2004 were reserved for
‘vulnerable’ children, disabled and non-disabled
included.86 It is imperative that implementation of
the ten year strategy explicitly considers the
needs of disabled children.
Direct Payments
Photograph supplied by Choices
Introduced in 1996, Direct Payments allow
disabled people to choose between direct
services (such as help from social services) or the
value of the service as a cash payment. The
Carers and Disabled Children Act (2000) made
Direct Payments available to 16 and 17 year
olds, carers and people with parental
responsibility for disabled children. In April 2003,
it became compulsory for local authorities to offer
Direct Payments to all individuals entitled to
social services who meet the eligibility criteria.
Direct Payments transfer control to the disabled
person or their parent/carer, and increase choice.
Only 10% of
childminders offer
services for
disabled children.
Even with more flexible work arrangements,
many parents are prevented from working
because of a lack of appropriate, affordable
childcare. Half of the parents surveyed by
Contact a Family who wanted to work, reported
that the lack of suitable childcare was the major
barrier.72 The government is responding and the
National Childcare Strategy (1998) signalled an
increase in government spending on childcare.
More recently, a ten year strategy for childcare
has been articulated, as has a vision for disabled
childcare (see Box 10).83 Since 1997, more than
553,000 new childcare places have been
created, benefiting just over one million children.
The Working Tax Credit, which includes an
element of childcare tax credit, has also helped
parents (see Table 4).
Although these general measures are welcome,
research by the Daycare Trust in 2001 found that
childcare for disabled children was extremely
limited. This was largely because of inaccessible
buildings and a lack of expertise.84 A recent
Box 10: The government’s vision of childcare
‘All families with a disabled child should receive childcare provision which is
sustainable, high quality, flexible, affordable and accessible — in other words,
implementation of the 10-year Strategy for Childcare should include disabled children
and their families on equal terms with non-disabled children and their families.’
‘As part of the 10-year strategy for childcare, the Sure Start Unit should ensure, by
2015, all families with a disabled child under five years, can access high quality,
29
Prime Minister’s Strategy Unit
flexible childcare.’
36
To be eligible for Direct Payments, social services
must have already assessed the disabled person
and given them a funded care package. Direct
Payments are therefore largely dependent on the
adequacy of an assessment. Furthermore,
eligibility and accessibility of Direct Payments
varies widely between authorities, as does
availability of services.87 Direct Payments cannot
be used to purchase health services or services
from local authorities; in areas where most
services are provided in-house, choice is
restricted. In fact, the Council for Disabled
Children (CDC) found that where local councils
had a wide range of good direct services, parents
were less likely to opt for Direct Payments.88
A Scope study of 31 people getting Direct
Payments found that all of them used the money
to recruit personal assistants.87 Many local
authorites did not allow the money to be used
on equipment and adaptations, or had no policy
or support on expenditure in other areas. The
notional hourly pay rates for personal assistants
used to determine levels of Direct Payment vary
greatly.87 They can also be inadequate. In one
conversation with a father of two disabled
children, NPC learnt that he was offered a Direct
Payment of £50 per night; while the service
provided by the local authority cost
approximately £30 per hour.
Ordinary lives
In September 2003, Commission for Social Care
Inspection (CSCI) figures showed that only 875
parents of disabled children and 125 disabled
young people (aged 16-17 years) were receiving
Direct Payments. Although this is roughly four
times the number of the previous year, it is still
less than 1% of disabled children.88
A recent CSCI report found that the main
barriers to take-up are a lack of clear
information, low staff awareness, restrictive or
patronising attitudes about the capabilities of
potential recipients, a reluctance to devolve
power, inadequate support services, overbureaucratic paperwork and difficulties with
recruitment of personal assistants. 89 The Scope
study found that most parents had difficulty in
getting information on Direct Payments from
local authorities. Respondents stated that more
training was required in employment law,
producing contracts and job descriptions, and
the disciplinary process.87
The government has urged councils to promote
Direct Payments. It has encouraged take-up by
supporting the work of the National Centre for
Independent Living. The Department of Health
(DoH) set up the Direct Payments Development
Fund to support the role of charities in expanding
use of Direct Payments. A new Direct Payments
guide was published in September 2003. Since
2002–2003, the take-up of Direct Payments has
featured in the indicators against which the
performance of social services is rated. The
government has recently introduced the concept
of ‘individualised budgets’ for disabled people
and families with disabled children. These
budgets build on Direct Payments and could
encompass housing, transport, equipment,
childcare and support services (akin to the
Austrian model described in Box 11). The
government recommends that these are in put in
place by 2012.29 At present, take-up of Direct
Payments remains low and individualised
budgets are at concept stage. There is much to
be done before a significant number of disabled
children and their families benefit.
What is the charitable sector doing?
It is the responsibility of the government to
alleviate poverty and charities should not step in
where the state has a legal responsibility.
However, charities can help by providing
information and advice and, sometimes, toppingup grants. Charities play an important role in
lobbying the government to change policies,
programmes, benefit levels and legislation.
Contact a Family informs families with disabled
children about the benefits they are entitled to
and how to access them. It also provides
information on their rights to flexible work and
guidance on how to approach employers.
Families
Box 11: International best practice — Direct Payments in Austria
In Austria, the state provides a direct cash benefit to all 300,000 disabled people and
their families. The amount is non-taxable and not means-tested. It has seven rates
depending on the hours of care needed per week, ranging from €145 (£98) to €1,532
(£1035) per month, with an average of €405 (£274). After assessment there is no
monitoring of the spending; yet no evidence of bad practice has emerged. Information
and help from a team of professionals (including doctors, psychologists, and
psychiatrists) is provided by mobile support units in six major towns.90
Local Citizens Advice Bureaux, welfare rights
centres and parents advice centres provide
information on benefits and how to claim them.
Citizens Advice Bureaux also advise on debt.
Local organisations working with disabled
children and their families, such as KIDS and
National Deaf Children’s Society, often help
fill out forms and deal with the administrative
process of accessing benefits.
The Daycare Trust is a charity which aims to
promote high-quality affordable childcare for all.
They are active campaigners and provide
information for parents, childcare providers,
employers, trade unions, local authorities and
policy-makers. They recently completed
research on childcare for disabled children.
Only 875 parents
of disabled
children and 125
disabled young
people are
receiving Direct
Payments.
The Action for Carers and Employment (ACE)
project is led by Carers UK and funded by the
European Social Fund Community Initiative until
May 2005. The overall objective is to raise
awareness of carers as a distinct group within
the labour market and to work with various
agencies to research and overcome barriers to
employment. Five local projects advise and train
parents on returning to work. The Nigel Clare
Network Trust offers practical support for
combining work and caring responsibilities and
Working Families’ ‘Waving Not Drowning’
project is a network for working parents of
disabled children.
Disability Law Service (DLS) is a charity that
helps disabled people access the benefits and
services they are entitled to (see Box 12). Local
law centres also assist with legal entitlement
issues, although they do not specialise in disability.
Box 12: Disability Law Service case example
DLS represented a young autistic boy in a case concerning the payment of the higher
rate of the mobility component of the DLA. The Social Security Commissioner had
decided that since his IQ was greater than 55 he could not be held to have a severe
mental impairment. DLS argued that IQ tests were not a useful measure of intelligence
for people with autism and that a person’s ability to interact with others (social
intelligence) should be taken into account. In a landmark ruling, the Court of Appeal
agreed. This decision will mean an increase in weekly income of over £23 for many
autistic people.91
37
Ordinary lives
Families
The Council for Disabled Children has
provided guidance to local authorities around the
country on setting up Direct Payment schemes.
It continues to disseminate best practice in this
area and to campaign for increased uptake.
The National Centre for Independent Living is
also actively working to increase the take-up of
Direct Payments. Local Mencap organisations
assist people with learning difficulties to access
Direct Payments.
Family Welfare Association is a national charity
that provides means-tested grants to families in
need (see Table 4). The charity React provides
financial grants to families with children who
have a life-limiting illness or disability.
The Family Fund (FF) is lobbying the
government to triple the rate of child benefit for
families with disabled children and to launch a
benefits take-up campaign for these families. It is
also urging the government to extend its grants
programme to families with incomes above
£23,000 and families with children over the age
of 15. The End Child Poverty campaign and
Council for Disabled Children are campaigning
for a number of measures that will go some way
to reducing child poverty among disabled
children. The Disability Alliance is monitoring
take-up of existing benefits and is part of the End
Child Poverty and Homes Fit for Children
campaigns. Barnardo’s is campaigning for a
national benefits take-up campaign. Additionally,
a coalition of charities, including Mencap,
Barnardos, NCH and the Muscular Dystrophy
Campaign, is campaigning for changes to the
Disabilities Facility Grant. They want to abolish
the means test, streamline the application
process to reduce waiting times, and increase
the current limit (some families have to pay more
than £50,000 towards the cost of adaptations).
Given the acute level of need, the best form of
immediate help would be to give money directly
to the families of disabled children. They can be
easily identified; they are either in receipt of DLA
or FF grants. However, the mechanism for such
payments of charitable money does not yet exist.
The FF has the infrastructure in place and
believes that it would be able to administer a fund
providing unrestricted small grants to families.
What are the outcomes of financial
assistance?
Adequate financial assistance enables families
with disabled children to purchase the additional
items and services needed as a result of
impairment, without forcing them to borrow or
cut out necessities. With financial help, families
with disabled children can be lifted out of poverty.
Direct Payments and individualised budgets go
further by ‘enabling’ families with disabled children
and providing them with choice and control over
which services they receive and when.
‘
By employing a personal
assistant it means I do not
have to be so dependent
on my family and I can see
my friends when I want to.
‘
Photograph supplied by Circles Network
Young person 88
38
Adequate financial
assistance enables families
with disabled children to
purchase the additional
items and services
needed as a result of
impairment.
Ordinary lives
‘We can now have a break, this is for the first
time in 17 years.’
Parent 89
Where parents know about, and have used, the
new rights to request flexible working hours,
their ability to cope has increased significantly.
They claim to be less worried, pressured or
stressed.72 Working reduces financial problems
and provides parents with a break from caring.
‘Without being able to utilise these flexible
working arrangements my single parent
household would not function, I could not
maintain my mortgage etc.’
Father office worker 72
‘It [flexible hours] will make life easier if my son
has hospital/doctors appointments, I can take
him without losing annual leave.’
Mother office worker
‘I go to work to escape; I go to work to
keep sane.’
Parent
72
72
Housing and adaptations
What is the situation?
When it comes to housing needs, disabled
children and their families need more than just
physical access. Adequate internal space,
suitable adaptations and equipment, safe
outside space and location, are all important.
Having appropriate housing is fundamental to
living a normal family life; poor quality or
inaccessible housing is hugely damaging to the
quality of life of a disabled child and his or her
family. As many as three out of four families with
disabled children live in unsuitable housing.29
Children’s chances of enjoying normal childhood
experiences can be seriously restricted by living
in homes ill-suited to their needs. Inappropriate
housing hampers movement, play and normal
family activities, as well as exercise, therapies and
personal care. It places families under increased
physical and mental stress. For example, homes
with no downstairs toilet can cause back injuries
for parents who carry or help children up and
down many times a day. A lack of space restricts
the mobility of severely disabled children. They
may be unable to play with brothers and sisters
or have a no privacy.92 Siblings sharing a room
with a disabled brother or sister may lack a quiet
space for homework or may be disturbed by
sleep or behaviour problems.
Research shows that the housing conditions of
families with severely disabled children are worse
than those of families on similar incomes with
non-disabled children. Statutory support fails to
address their needs adequately. A 1998 study
found that families of children with behaviour and
or learning difficulties are more likely to face
problems with the location of, and, safety in the
home. Families of children with physical
impairments or a serious health problem were
more likely to report problems with access and
storage of equipment. In total, 55% of families
reported problems due to a lack of family space
and 42% stated that kitchens or bathrooms
were difficult to use or that they only had one
bathroom (41%) (See Table 5).92
Children’s chances of enjoying normal childhood
experiences can be seriously restricted by living in
homes ill-suited to their needs.
Photograph supplied by Mencap
‘Direct Payments have been brilliant. The
children have been able to live a normal life and
my husband has not had to give up his job.’
Parent 89
Families
39
Ordinary lives
Families
Only 2% of
families can afford
to make the
contribution they
are supposed to
make to meet
the cost of
adaptations.
‘Mr and Mrs A lived in a four-bedroom house on
an estate with a bad reputation on the edge of
the city. They had six children, two of whom
were severely disabled. One child had a serious
heart problem and the other had cerebral palsy.
Their ‘people carrier’ financed through the
Motability scheme, was frequently vandalised,
but was too big to go into the local garage
block. The family reported that their council had
been very dismissive of them when they asked if
their garage could be made larger. A specialised
buggy had just been stolen from the shed. The
garden was unusable — it had neither grass to
play on, nor a hard surface. The family had had
graffiti daubed on their walls and one of the boys
suffered sexual abuse from a neighbour. The
house was in poor repair and very cramped.’ 92
The study also found that:
• Housing problems are linked to poverty among
families with disabled children, but even
middle-income families with disabled children
experience considerable housing problems.
• Compared with families on similar incomes,
families with disabled children are more likely
to rent than own their home.
• Families with disabled children who rent from a
local authority or a private landlord are likely to
have more problems than those who rent from
housing associations or who own their home.
• Non-white families with disabled children were
less likely to be living in a suitable home than
white families with disabled children.
• Most families had moved house at least once
as a direct response to their child’s needs.
The majority of these families had received no
professional advice or assistance with finding
a suitable alternative home.
What is the government doing?
The Disabled Facilities Grant (DFG) (see Table 4
in financial section) is the state’s contribution
towards the cost of providing adaptations and
facilities to enable a disabled person to continue
to live in their home. An assessment of needs is
made, usually by an occupational therapist from
social services, and an income-based meanstest is carried out to assess the contribution
towards the cost of adaptation that parents must
pay. The maximum DFG is £25,000. It cannot be
used to help the cost of families moving house
if the necessary adaptations are not practical in
the current home. There is widespread
recognition that the means test is at best
inadequate, and at worst unfair.
Means-testing the DFG is seen by many as
unfair for a number of reasons. The test used is
one of income, which fails to take into account
family expenditure or the increased cost of
having a disabled child (see Box 13). Parents are
sometimes assessed as having to contribute
thousands of pounds towards the cost of
adaptations. For example, families on an income
of £40,000 per annum are expected to
contribute £81,000 towards the total cost of
adaptations. Only 2% of families can afford the
contribution they are supposed to make.93
Table 5: Housing problems for families with severely disabled children*92
Housing problem area
% of families
reporting problems
Lack of space to play, or space apart from other family members
55
Functional rooms (kitchen, bathroom, toilet) difficult to use because of size
42
Only one toilet and/or bathroom
41
Lack of storage space for equipment
38
Location
38
Access around, and in and out, of the home
33
Lack of downstairs toilet and bathing facilities
33
Housing condition
27
Lack of space and equipment to carry out therapies
21
Inadequate facilities to meet care needs (e.g. lifting, toileting and bathing)
21
Child’s safety inside the home compromised
3
* Data from families comes from FF database and therefore is not representative of all families with a disabled child, but, is comparable with families
on low incomes without a disabled child.
40
Ordinary lives
In one study, three quarters of families reported
that an occupational therapist had not assessed
their housing needs. Families who had been
assessed did not always get the necessary
adaptations made. Others were waiting for vital
adaptations or to be re-housed by housing
associations or local authorities.92 A study by the
Office of the Deputy Prime Minister (ODPM)
found that it was common for disabled people to
wait a year or more for adaptations. When
adaptations are assessed as necessary, the DFG
is mandatory (assuming parents can make their
contribution). This means the only way for local
authorities to ration the fixed, inadequate and
shrinking (in real terms) pot of money for the
DFG is through waiting lists. Increasing numbers
of elderly and disabled people means increased
pressure on the DFG money.
Administration of the DFG is also complex for
clients and social services staff.94 Another study
reported a lack of clarity about roles and
responsibilities across the various (and
numerous) practitioners and departments
involved in the DFG, and failure to work in a
joined-up manner. Failure to understand needs
and provide information on entitlements were
also common.92
Some families rely on support from their local
community to raise funds for their contribution to
the DFG (see Box 14). Although the community
may be happy to oblige, it does not make it right.
If a health professional has assessed that a child
needs housing adaptations (which often reduce
the value of a property), adaptations should be
made as soon as possible, without an unrealistic
and unfair contribution from parents. The DFG
means-test for children should be abolished.
After a successful campaign by parents and the
Homes Fit for Children group of charities, meanstesting was recently abolished in Northern
Ireland. Lobbying is now happening to achieve
the same in England and Wales. In order for
abolition of the means-test to be fully effective,
local authorities must allocate extra resources.
What is the charitable sector doing?
ASBAH, Barnardo’s, Child Brain Injuries
Trust, Contact a Family, Council for Disabled
Children, Down’s Syndrome Association,
Family Fund, HoDis, Mencap, Muscular
Dystrophy Campaign, NCH, Parent Project
UK and Scope are involved in the Homes Fit
for Children campaign. Their aim is to have the
means-test abolished.
What are the outcomes of attending to
housing needs?
The home is the centre of family life. For
disabled children and their families, whose lives
are impeded by poor services and ignorant
public attitudes, it ought to be a sanctuary. The
family home is where disabled children receive
personal care. Care in an unsuitable environment
is demeaning and inappropriate. Improving the
homes of disabled children is a tangible way of
improving their quality of life.
‘
If you can get
your home
right, you can
cope. Within 24
hours of being
in this house, it
was like wow!
She was a
different child.
‘
Families either go into debt to finance the work,
or they don’t have it done and continue to live
and care for their children in unsuitable homes.
One study found that of all families assessed as
needing adaptations, one third made the
required contribution; a further third had been
unable to, so the adaptation was not carried
out.92 The means-test penalises those families
who save the state large amounts of money a
year by caring for children in their own home.
Families
Mother of a severely
disabled girl after moving
to a well adapted home97
‘We were desperate for the work to be done,
because every time he wanted to go to the toilet
he had to crawl upstairs, so I didn’t like that.
And if there are any guests, Chris does not like
crawling in front of them, so now he is all right
and he has the freedom to go to the toilet,
watch telly…’
Parent 6
Box 13: Fighting the system
‘We were recently driven to take our case to the High Court out of sheer desperation
because of the need for special equipment for our boys. Our local authority has
always maintained that we should apply for a Disabled Facilities Grant (DFG).
Because we have more than £15,000 in assets, we would be means-tested and we
knew this would result in us having to meet the whole cost ourselves.
The difficulty with means-testing is that it doesn’t take into account our debts or
outgoings — we have no spare cash to buy £40,000 worth of equipment. Loving the
boys has cost us our livelihoods as we simply don’t get enough hours of domiciliary
care to enable Michael or I to work.
As a result, the children are left with nothing and the local authority walks away.’
In October 2004, the Spinks lost their High Court battle for help towards funding the
£40,000 worth of equipment their disabled boys need.
Henrietta Spink
95
Box 14: Fundraising for DFG contribution
‘In order for Tilly to enjoy independence in our own home, a specially designed and
equipped ground floor extension would need to be created. Following months of stress,
it was agreed that the statutory Disabled Facilities Grant would fund approximately half
of a £60,000 project.
Finding £30,000 is beyond the average family, so once again we turned to
the community for support. They didn’t let us down. [...] I don’t think there is a
single member of the community who has not made a contribution to our
daughter’s happiness.’
Parent
96
41
Families
Short breaks
Box 15: A day in the life of Henrietta Spink
‘I wake at 2.30 a.m. to change Henry’s nappy and just can’t get back to sleep. By 4.30
a.m. I finally manage to nod off. The alarm clock peals at 5.30. My eyes yearn to stay
closed but I force myself out of bed — our schedule is tight as the bus comes at 7 a.m.
to pick Henry up. Freddie’s comes half an hour later. It takes both of us an hour and a
half to get the boys ready for school.
I rush down to prepare breakfast. It isn’t just a question of pouring out the cereal and
a quick drink of milk. There are endless supplements and medication to prepare for
each child. I’ve got my time down to fifteen minutes on each task. Then it’s back
upstairs, where Michael is getting Freddie dressed. I finish him off and take him
downstairs and start his breakfast. He has all his medication at the start so that we
don’t miss any out. I send in emergency medication to the school just in case one of us
does forget something in the rush. He suffers terribly if the antacids are not given.
Michael gets Henry dressed and brings him downstairs. Either I feed Henry or Michael
does. Henry’s not easy to feed. Most meals take an hour — that’s three hours a day
just shovelling food. No wonder he doesn’t like meals — he’s probably as bored as we
are. He has an amazing habit of flicking the spoon out of your hand just as you get it to
his mouth and the cereal flies everywhere. Ideally it takes two people to feed Henry,
one to hold his hands, but we can’t afford that luxury most days.
While one of us struggles to feed Henry, the other takes Freddie to the loo and puts on
a pull-up for the bus journey. It’s impossible for the bus to stop en route for Freddie if
he needs to, and it’s the only way we have of keeping him dry until he arrives at school.
Toileting Freddie takes about fifteen minutes. Then it’s back downstairs where the
other has hopefully finished feeding Henry. Sometimes, despite the overall we put on
him, Henry is completely covered in milk and cereal and a complete change of uniform
is needed. The boys have about eight full uniforms each to cater for the constant
changes they require. Finally we get their coats on and the bus comes.
As soon as the boys are gone I change Henry’s sheets, which will inevitably be wet or
sicked on…It’s rare that I don’t have to change his bedding in the morning. When I get
to Freddie’s room my heart beats faster. I never know what I’ll find. All I do know is that
there will be at least an hour’s work dealing with whatever is involved…he might —
and this is the one I dread most — have done a poo and spread it everywhere.
By nine o’clock I feel fairly tired. No time for that — need to clean the house…It takes
forty minutes to an hour on average to do the laundry — the boys seem to pee and
dribble an awful lot. Then it’s another hour to prepare food that they ’will’ in Henry’s
case, and ’can’ in Freddie’s, eat…
Feeding, bathing and toileting the boys takes two to three hours every evening, if we’re
lucky. Henry usually sits for at least forty minute on the loo and someone needs to sit
with him at all times because he can unexpectedly fit. He likes to be entertained, so we
read to him…
The boys are up at 6 a.m. Saturday morning. The same arduous day begins all over
again, but this time there’s no carer and no school, it’s just Michael and me, facing the
prospect of round-the-clock care for the next forty-eight hours.’
10
Henrietta Spink, mother of Henry (16) and Freddie (12), both disabled boys
A recent survey showed that 80% of
families had reached breaking point.
‘
A recent Mencap survey found that 80% of
families with children with severe or profound
learning difficulties had reached breaking point.98
Although these families choose to keep their
children at home, the physical and emotional
strain is immense. Parents and carers suffer
innumerable sleepless nights and spend their
waking hours caring for their children.* An earlier
Mencap survey found that this care takes up at
least ten hours of a parent’s day; it can also
involve night-time care.99 Parents not only care
for their children at home, but accompany them
to numerous appointments. Three quarters of
profoundly disabled people visit a hospital up to
ten times a year. At least 50% are in contact
with a healthcare professional almost every
day.14 Caring for a disabled child is highly
intensive and can be a life-long commitment.
‘My own health has deteriorated. I have suffered
with depression for over two and a half years. I
don’t feel I can ever get off tablets. I have
anxiety attacks that feel like I am having a real
heart attack. I am only 26!’
Parent 98
A break from this care provision is vital for the
well-being of the carer. It also provides a good
opportunity for the disabled child to have a
break from the carer. It may enable the child to
have new experiences, meet new people,
develop new relationships and enjoy leisure
activities. Small breaks from caring are often the
only things that prevent families from reaching
breaking point.
What are short breaks?
A short break is ‘A session, or more, of care or
support that enables disabled or vulnerable
individuals to spend time away from the
person(s) who provide them with regular and
substantial care. Such breaks can be provided in
the individual’s own home or in another setting,
but no break should exceed one month’s
continuous care.’ 101
Traditionally known as ‘respite care’ (see Box 16)
and consisting largely of residential care, short
break services now include:
• Shared care schemes (also known as ‘familybased’ or ‘family link’ services) — a disabled
child spends time out of their home with
another individual or family (may be day or
overnight care).
†
‘
Ordinary lives
It’s a real treat to have a shower.
29
* As many as 45% of children in special schools wake up regularly at night, compared with 13% of children in mainstream schools.
†
These family-based short breaks have been available since 1976 when two local councils (Leeds and Somerset) set up pioneering schemes. Before this, short breaks
were predominantly provided in hospitals or hostels.
42
Parent 98
Ordinary lives
Families
• Residential services. These are usually
overnight services in an institutional setting or
residential unit, funded by statutory services.
• Domiciliary services (also known as ‘outreach’
services). Services are provided in the child’s
home, usually by the statutory sector.
Photograph supplied by Shared Care Network
• Sitting services. Care that takes place in the
child’s home; usually provided by a registered
sitter (not funded by statutory services).
• Befriending schemes — a one-to-one
relationship (usually with a volunteer) that
enables a child or young person to access a
range of community or leisure activities.
• Community and leisure activities. Care is
given within a range of organised group
activities, such as play schemes, after-school
clubs, youth and weekend clubs.
Box 16: From ‘respite’ to ‘short breaks’
The Oxford English Dictionary definition of ‘respite’ is:
‘n 1: a short period of rest or relief from something difficult or unpleasant; 2: a short
delay permitted before an unpleasant obligation is met or a punishment is carried out.
v 1: postpone (a sentence, obligation, etc.); grant a respite to (someone, especially a
person condemned to death).’
These definitions have negative connotations. They imply that carers do not enjoy being
with their children, that caring is an unpleasant burden. Because of this, respite care is
increasingly referred to as short break care to show that it provides a break both for
the carer and the child — and that it is often enjoyable for both!
Photograph supplied by Shared Care Network
There are an estimated 189 shared care
schemes in England, Wales and Northern Ireland
for disabled children and adults.102 The primary
service provided by these schemes is short
breaks away from home with a support carer. Of
the children’s schemes, 45% provided sitting
services, 32% befriending services and 25%
other services, including youth clubs or holiday
placements.103 This diversification is driven by
number of factors: the changing population of
disabled children; the move towards inclusion of
disabled children into mainstream services; a
move to providing services that benefit the child
as well as the parents; and the increasing
difficulty in recruiting carers to provide overnight
short breaks.104
43
Ordinary lives
Families
The
majority of
short break
services
are
provided
by local
authorities.
Who provides short breaks?
How many people receive short breaks?
Residential care can either be provided by local
council in-house provision, health trusts,
hospitals, boarding schools or by the independent
sector, both charitable and private. Local
authorities provide most shared care services — a
1998 study of 204 shared care schemes found
that charities controlled only 25% .103 All of the
schemes are funded, at least in part, by local
authorities. The largest charitable sector providers
of short break services are Barnardo’s and NCH;
approximately 80% of their local scheme costs
are paid for by local authorities.
In 1998, the Department of Health estimated
that 10,000 children and their families benefited
from short break services.106 This represents just
1.4% of all disabled children and less than 15%
of those with severe learning difficulties.*
Recently, the Department of Health reported that
only one in five people with a learning disability
known to social services is getting a break.107 In
one week in 2003, a reported 29,700 disabled
children received any form of support from social
services and around 8,100 children (disabled
and non-disabled) received respite care.108 At a
local borough level, numbers indicate that
1–10% of disabled children are receiving short
breaks from social services.
The typical amount of care provided by shared
care schemes is one 12-hour session per week
with an average cost per child of £1,767 per
annum.103 Because these schemes
predominantly use volunteer carers, they are the
most cost effective type of short break. A study
of the South West found that the average daily
cost of residential services was £176. The
highest average daily cost was in NHS units
(£241) and the lowest was in residential schools
(£98).101 In London, NPC found the cost per
child per night for short breaks ranges from
£300-450.105
‘Duke relies on me, but I can’t rely on Social
Services to pay for the services that Duke needs
or to help me take care of him. I have paid with
my marriage and with my health. All I need is a
bit of help with Duke. Is that so much to ask?’
Parent 98
Although exact numbers are unknown, it is clear
that far too many carers are not receiving any
short breaks. If they are, the provision is so
minimal it makes little difference. The Mencap
survey found that 60% of families were getting
no short break services at all, or services so
minimal as to not meet needs.98 This is
consistent with its earlier survey, which found
that 48% of families received no help from
outside the family and a further 30% received
less than two hours support per week.99
The Audit Commission states: ‘What is provided
is often too little and too late to make the best
possible improvement to their everyday lives’. It
gives an example of a single mother with three
children — two of them autistic and one with
Asperger’s Syndrome. The mother was
struggling to cope, but the children did not have
the ‘complex’ needs required to meet criteria for
short breaks. Nor did they have the ‘severe
challenging behaviour’ required to be eligible for
health short breaks. The health short break
service finally offered to ‘help out’ for a short
time only, because it could not help with the
social need for a break from caring.6
Photograph supplied by Shared Care Network
One study found that almost 90% of shared care
schemes had waiting lists. The numbers on the
waiting lists were equal to half the number of
children actually receiving services.103 A third of
all users wait over a year for services. These
numbers, although startling, are conservative
because they only include those children who
are referred to services (usually by social
services) and who meet the eligibility criteria.
Over 85% of schemes were found to have
eligibility criteria. Although most schemes cater
* The Department of Health estimates that 65,000 children and young people have severe and profound learning difficulties.14
44
Ordinary lives
for people with learning difficulties, the criteria
often exclude those with complex health needs
or challenging behaviour — those who most
need a break. In particular, children with autistic
spectrum disorder and technology-dependent
children have difficulty accessing short break
services.109, 110 A recent study found that over
half the sample received neither domiciliary care
or care away from the home; many received
insufficient or inflexible support.16
10,000 children
and their families
benefit from short
breaks. This
represents less
than 2% disabled
children.
commitment required of carers. In order to bolster
recruitment, payments to support carers have
been increasing. Payment to children’s support
carers in 1998 averaged £16.22 for 12 hours.103
However, a study of ten short break schemes in
England, Scotland and Wales in 2003 found that
although paying a salary to carers improved the
stability of placements and provided care for
children with more complex needs, there was no
consistent impact on waiting lists.113
‘They wanted us to try a respite family, but they
couldn’t find a family that would take her. By the
time she was six, we had been through four
families and the last family had her for about an
hour-and-a-half and they brought her back and
said ‘sorry, we can’t cope’ .’
Parent 110
Another group receiving proportionately less
provision is black disabled children and their
families. A 2002 study found that the take-up of
short breaks by black families had not improved
over ten years. A disproportionate number were
using institutional rather than family-based
provision, compared to white families.111
Although home-based services are particularly
popular among this group, a lack of
communication about services, concerns about
the appropriateness of services and a shortage
of black social workers and short-break carers
are acting as barriers to access.
90% of shared
care schemes
have a waiting list
of half the number
of children they
serve.
Photograph supplied by Merseyside Access to Play
The main reasons quoted for this huge level of
unmet need across the board are a shortage of
funding and a shortage of support carers.
Shared care services often have a low status
within social service departments, resulting in
under-investment.103 Services are budget-led,
rather than needs-led. This lack of resources
prevents schemes from: raising their local profile;
pro-actively recruiting a diverse range of carers;
providing appropriate training; providing enough
support; paying carers appropriately and
providing equipment to carers.112 The result is
too few services for too few children and their
families. A rough estimate of additional funding
required to serve a further 50,000 of the
neediest families is £100 million per annum.*
As well as a lack of funding, recruitment is
hampered by regulatory requirements,
assessment procedures, training, lack of staff to
focus on recruitment and the relatively long-term
‘
‘
Families
We can take only the tip of the iceberg. Many children don’t
meet our criteria and they might have quite complex needs
but they don’t have palliative care needs or degenerative
Service manager
conditions so they get nothing.
6
* £2,000 x 50,000 families = £100 million. This represents 0.025% of annual government expenditure.
45
Ordinary lives
Families
What is the government doing?
‘
Under the Children Act (1989), support services
must be provided to disabled children (classified
as ‘children in need’). Furthermore, under the
Carers (Recognition and Services) Act (1995),
social services must assess the needs of the
carer as a separate activity from the assessment
of the child’s needs. However, the Mencap
survey found that 60% of families had never had
a Carer’s Assessment.98 Even if the needs of the
carer are assessed, there is no legal obligation for
the government to provide short breaks. Without
a statutory right to provision, many carers either
get put onto a waiting list or have to fight
continuously for any service provision at all.
I cried bitter
tears that I
could not even
attend my
father’s funeral
without a battle
for care for my
children. I don’t
think I have ever
felt as alone as I
did that day.
‘
Parent
98
The government has come to recognise the
importance of short breaks. The Social Services
Inspectorate (SSI) claims that they are ‘almost
universally regarded by parents as a critical
service in supporting families within the
community’.106 The Quality Protects initiative for
transforming children’s services in England
specifically promotes the increased provision of
short break services to disabled children and
their families.114 The central government has
introduced changes, such as the Carers
Strategy (1999) and provision in the Carers Act
(2000) for local authority social services
departments to run short term break voucher
schemes. Short term break voucher schemes
offer flexibility in the timing of carers’ breaks; the
people being cared for can also choose how
community care services are delivered to them
while their usual carer is taking a break.
Additionally, Direct Payments have been
extended to parents and carers of disabled
children to purchase their own care.
The government has also provided extra money
for services. For example, the Carers Grant to
take short term breaks is increasing by £60
million to £185 million by 2006, and the Carers
Special Grant will be ring-fenced until
2004/2005. The Children’s NSF includes
standards that ensure short breaks are offered
without ‘undue delay’ and that there are a ‘range
of services from which to choose’, including
home, family-based, residential, communitybased, sitting services and Direct Payments. 47
The DfES has commissioned a document to
guide local managers and practitioners on how
to implement the NSF standards. However,
these initiatives and funds do not seem to have
translated to local provision yet. A dramatic
change is needed in funding, recruitment and
training of carers if demand is ever to be met.
What is the charitable sector doing?
Both Carers UK and Contact a Family support
carers via helplines and online information. They
inform carers of their rights and how to
approach social services for provision. They will
write letters on behalf of carers to local
authorities and will also put the carer into
contact with local support groups and shared
care schemes. They also lobby the government
on carers’ rights.
Shared Care Network (SCN) is a charity that
acts as an umbrella body for approximately 174
member shared care schemes across the UK. It
lobbies the government, disseminates information
and best practice and assists in recruitment of
carers (e.g. by providing posters and information
and co-ordinating ‘Share the Care’ week).
Recently, the DfES commissioned it to produce
guidance on implementing the standards around
short breaks in the Children’s NSF. It also
commissions the regular ‘state of the nation’
study of its member shared care schemes.
Photograph supplied by Shared Care Network
In addition to these three organisations, the
Council for Disabled Children and Mencap
are both active in the campaign to increase the
level of provision of short break services.
46
Funding local providers of short breaks, such as
Barnardo’s, NCH, KIDS, The Children’s Trust
and Crossroads, is more difficult because short
break services are provided under contracts with
the local authority. Any additional charitable
income is generally not used to increase the
quantity of provision because of the concern of
crowding out statutory provision and/or funding.
The charitable income may be used to increase
the quality of provision (for example, by providing
better equipment or funding building upgrades)
or to fund increased local advocacy. This in itself
is often problematic because the local project is
dependent on the local authority for survival.
Ordinary lives
The outcomes of short breaks are difficult to
measure but the services should be seen as
beneficial per se. The more high quality services
provided the better. Short breaks provide both
the carer and the disabled child with much
needed time apart and allow both to focus on
something different. For the parents, time away
from their disabled child to be with their partner
and/or other children is the single most
important factor in helping their relationship. 61
For the child, short breaks are an opportunity to
meet new people, to develop relationships and
to gain some independence from their carer. The
national survey of short break schemes in 1999
interviewed a small number of children. It found
that they enjoyed the experience and the
relationships with their carers, and that they
benefited from the wider social activities and
networks opened to them.103
‘We love Nathan to bits, but this gives us time to
devote to our other son who misses out a lot.
We can also do things we cannot do with
Nathan. It gives us time as a couple. It can
sometimes be the light at the end of a tunnel. If
we have had a really bad weekend, knowing
Nathan is going to Carol and Rob’s helps us
carry on. He loves spending time with Carol and
Rob. He really enjoys going, so we are happy
because he’s happy. They spend a lot of time in
the garden with him, which he loves. He has a
flair for it and meets a lot of people. He is well
known where they live and they all accept him
for who he is. He is safe. Knowing Nathan can
go somewhere where he is happy, safe and he
enjoys is wonderful. If it wasn’t for Rob and
Carol and people like them, we do not know
what we would do.’
Parent 115
‘
‘
What are the outcomes of short breaks?
Families
It’s good because it gives
you a break from your
parents and your parents a
break from you.
Disabled young person
115
Short breaks can reduce family and carer stress,
which has been cited as a major reason for
placing a disabled child in residential care.110 Just
under £2,000 per child per year should be
compared with the annual costs of residential
care, which range from £50,000–£300,000.98, 117
Foster care can cost £750 per week including
training, short breaks and support for the foster
family.118 The Children in Need Census of 2003
found that a looked after* disabled child cost
local authorities £635 in the survey week,
whereas supporting a disabled child within their
family cost £150 per week.108
Whichever figures one considers, at less than
25% of the costs of caring for the child following
family breakdown, short breaks are a worthwhile
investment, even if they only prevent one in four
carers from reaching breaking point.
‘He doesn’t have a group of friends…he doesn’t
go anywhere and he goes to a special school
out of the borough, so there is no one he sees
regularly. I know it sounds a bit over the top but I
think for Toby this [his short term break] may be
the single most important thing that has ever
happened to him.’
Parent 37
116
For an annual cost of
£1,767 per child, short
breaks can prevent
residential care costs of up
to £300,000 per annum.
Photograph supplied by Shared Care Network
‘I need a break from my mum, I stay in all the
time, I never play out by mine.’
Disabled child
* Children who are cared for by social services are described as ‘looked after’. They are often placed in residential children’s homes or foster care.
47
Ordinary lives
Families
Emotional support
‘
The first cost is
the emotional
cost, you’re
devastated and
scared. Parent
Although this report has illustrated the high
financial cost of having a disabled child, it is the
emotional cost, the impact on family life and the
feeling of isolation that parents find the most
difficult to bear. Parents often feel they have
nobody to speak to and that no one
understands their situation. Families may be
unable to attend mainstream activities or visit
friends, which increasingly leads to social
isolation. Families value counselling and peer
support. Emotional support enables them to
better meet their children’s needs.29
‘The whole of my life is centred around Richard.
I have had no social life, no life of my own.’
Parent 98
‘
66
‘
You don’t want
to go out with
them…
because
people stare,
and you are his
sister, but you
are holding his
hand to make
sure he doesn’t
run away.
‘
Sibling 6
The impact on siblings
Having a disabled sibling has a dramatic impact
on a child. The experiences of siblings of
disabled children are distinct from other children.
There are an estimated two million people of all
ages with a brother or sister with special needs,
disability, or chronic illness in the UK.119 Younger
siblings often lose out on care; their relationships
with parents suffer as a result. Older children
may end up taking on a caring role. Parents
often worry that this causes siblings to grow up
too quickly.
‘I’ve got a six-year-old [non-disabled] child who
is like going on 40, you know he’s like a little old
man and sometimes you think, that’s awful
because they don’t get a childhood. And some
of the things he comes out with I think, ‘oh
dear’. And they have all their worries and all their
problems and they’ll be upset one day and you
ask, ‘What’s the matter?’ And I’ll say, ‘Why
didn’t you tell me?’ and he says ‘Because
you’ve got too much else to do.’
Parent 66
Siblings of disabled children may also be
isolated from their peers. It is difficult for parents
to take them out, or have other children round to
the house. Parents may feel reluctant to let them
go to friends’ houses because they feel guilty
about not being able to reciprocate. Disabilities
may affect siblings’ ability to play together,
further contributing to loneliness and isolation of
non-disabled siblings.
Children often have a lot of questions relating to
their sibling’s condition (particularly if it is lifelimiting). They worry that they may develop it, or
pass it on to their own children. Often, they don’t
feel able to ask parents about this for fear of
upsetting them. Siblings’ education may suffer as
a result of being constantly tired because of
interrupted sleep. They may be bullied at school
because of their brother or sister’s disability. Doing
homework may be impossible because of
disruptive behaviour of a sibling. It is often siblings
who find the negative public attitudes towards
their disabled brother or sister most upsetting. All
of this can lead to feelings of resentment, followed
by guilt about having these feelings.
48
‘Dominic bites a lot. I don’t know why. I think it’s
his way of kissing. He only usually bites when
he’s affectionate, not when he’s angry. That’s
what the doctors say and I believe them. He
only bites when he’s having fun. It’s all right. You
can kind of forgive him. When he’s cross it’s
horrible. Once he got on my back and wouldn’t
come off. He bit me through my pyjamas. I was
giving him a piggy-back and he bit me. It spoils
things a lot. You’re having a really nice time. It’s
hard. I want to believe what the doctors say. I
know where they’re coming from. My step-dad’s
brother got bit. It was hard to tell him. He didn’t
quite understand. Dominic’s getting out of the
habit of biting. Now he’s pulling hair.’ 115
‘My sister gets support in the hospice and gets
to go on holiday. Me, I’m stuck at home. It
would be nice if stuff happened to me.’ 60
What is the government doing?
The Children’s NSF recommends that
appropriate mental health services are made
available to siblings of disabled children.
Furthermore, the Children Act (1989) provides
the framework for support offered to children ‘in
need’. Although siblings of disabled children
aren’t explicitly catered for in the Act, the
Guidance and Regulations of the Children Act
which refers to disabled children states: ‘the
needs of brothers and sisters should not be
overlooked and they should be provided for as
part of a package of services for the child with a
disability.120 If the sibling is providing substantial
amounts of care they may be entitled to an
assessment of their needs in their caring
capacity. Either way, the needs of siblings should
be assessed by local authorities where
appropriate. There is little evidence to suggest
that this is happening.
What is the charitable sector doing?
The emotional support of families is one area
where the government has few obligations and
the charitable sector has a significant role to
play. Most emotional support comes from
personal contact, usually facilitated by a local
parent group or a single condition charity. Parent
support groups meet on a regular basis, both for
social purposes and as a way of exchanging
information. Contact a Family provides a Family
Group Action Pack, which provides information
on setting up and running a support group. It
can also administer grants to groups on a
donor’s behalf.
Ordinary lives
Contact a Family and Carers UK provide details
of local parent organisations to families via their
helplines. Contact a Family also provides details
of any relevant single condition organisations.
These single condition charities often become
the first point of call for parents. They typically act
as one-stop-shops for information about the
condition and the relevant services. Many
organise social events where families meet others
in similar situations. Syndromes Without a
Name (SWAN) provides support for families with
children who have no diagnosis. Where a single
condition charity does not exist, Contact a
Family will provide links to parents of children
with the same condition. It also produces
factsheets for grandparents and fathers.
Services for disabled children are increasingly
inclusive of all family members which creates
opportunities for socialising. NPC found a
number of holiday, days out and play group
providers where the entire family was welcome.
A number of charities have recently developed
siblings groups. This idea is well established in
the US, but is just starting to take root in the UK.
These groups usually consist of around eight
children in a fairly narrow age range. The group
is confidential and meets weekly over 6–8 weeks
and then again at regular reunions.
Section summary: families
Families with a disabled child are one of the
most disadvantaged groups in society. They are
disproportionately likely to live in poverty and
have high levels of debt. This is because the
cost of raising a disabled child is three times
greater than for a non-disabled child, and
parents are often unable to work because of
intense care requirements. Most families do not
receive any breaks from this care. Furthermore,
nearly three quarters of families with a disabled
child live in unsuitable housing. In addition to the
practical difficulties, families often experience
emotional devastation, anxiety and loneliness.
• Increase the level of benefit (child benefit or
DLA) and the take-up of DLA and child tax
credits.
• Develop a Child Trust Fund for disabled
children.
• Increase the threshold for eligibility for the
Family Fund.
• Extend the use of Direct Payments.
• Eliminate the means-test and increase the
maximum level of the DFG.
Sibs is a relatively new charity that offers an
advice and support line for siblings and
professionals. It also provides help and training
on setting up sibling groups. It has produced a
set of factsheets in many languages aimed at
both siblings and professionals.
• Allocate specific childcare places for disabled
children.
Carers UK informs and advises young carers via
its helpline and website. NCH and The
Children’s Society also assist young carers.
Genetic Interest Group provides screening
services for families of disabled children. It also
has a resource pack for brothers, sisters and
parents of people with a genetic disorder.
Sibs offers an advice and
support line for siblings and
professionals.
Families with a
disabled child are
one of the most
disadvantaged
groups in society.
The government should do more to address the
needs of disabled children and their families.
Visions and promises are not enough. It should:
‘It helped to know that I’m not alone with a
disabled brother or sister.’
Sibling 121
Short break service providers, such as NCH,
Barnardos, and KIDS, run sibling projects as
part of their local service provision in some
areas. The funding for these is mixed; the
majority is from statutory streams, such as the
Children’s Fund. PSS and Choices Project
(Merseyside Youth Association) both include
siblings of disabled children in their play and
leisure services.
Families
• Ensure local authorities provide short break
services to a higher proportion of families.
Even though these measures require funds,
there are economic and moral reasons to act.
Supporting families before they can no longer
cope is less costly and emotionally preferable to
looking after children following a family
breakdown. Providing appropriate childcare that
enables parents to work is similarly economically
beneficial. Last, but not least, social justice
requires that the life chances of disabled children
and their families are improved.
Given the government’s responsibility, the role of
charities might appear less obvious; however, it
is no less important. Charities are often the first
port of call for families. They provide emotional
support, information and help in navigating and
accessing the range of available benefits. As
providers of services, such as short breaks,
charities often use voluntary funding to
experiment with new approaches, which are
then rolled out under statutory funding. Charities
also inform service providers around the country
of changes to legislation, new approaches and
activities. Most importantly, they lobby the
government and support disabled children and
their families to lobby for themselves. There is a
strong case to support them in these roles so
that families with disabled children — who are
disadvantaged through no fault of their own —
can lead ordinary lives.
49
Professionals and policy-makers
‘
We live in a
society that
sees people
like my
daughter as
worthless. Why,
then, would it
be one that
delivers high
quality
services?
‘
Parent 99
Parents want adequate financial resources and
appropriate services that they have some
degree of choice and control over, and that are
reliable, responsive, and coordinated. They are
not getting any of this, at least not consistently.
This section explores what the government is
doing to rectify the situation and how the
charitable sector has a significant role in
advocacy as well as in developing and
disseminating best practice approaches.
A damning 2003 Audit Commission review of
services for disabled children in the UK found: ‘a
lottery of provision, a jigsaw puzzle of services,
and too little provided too late’.6 The report set
out a vision of effective services. Together with
voluntary sector campaigning, it has ensured
central government recognises the issues that
disabled children and their families face. A
number of pivotal documents addressing these
issues were recently published. The most
important documents were: the Prime Minister’s
Strategy Unit’s ‘Improving the Life Chances of
Disabled People’, the Children Act (2004) and
‘Every Child Matters: Change for Children’
programme and the National Service Framework
(NSF) for Children, Young People and Maternity
Services. Together with the Disability
Discrimination Acts (DDAs), these documents
set out compelling visions of a future where
disabled children and their families can easily
access services of their choice (whether
mainstream or specialist) and are involved in the
design and delivery of all such services.
3
However, under Labour’s ‘new localism’, an
increasing number of responsibilities have been
decentralised to local authorities and there is
little ring-fencing of funds. This causes tensions
between local democracy and the achievement
of key government objectives for minority groups
such as disabled children. This is leading to
extreme variations in services because
leadership, priorities, resources and budgets
differ markedly between local authorities. The
focus of voluntary sector lobbying needs to shift
towards ensuring the compelling visions outlined
centrally are realised on the ground. This is
where private money can make the most
difference to the lives of disabled children and
their families.
Government context
Legislation
There are numerous acts covering the rights, as
well as the education, health and social
wellbeing, of disabled children and their carers
(see Appendix 2). The DDA (1995) protects all
disabled people from ‘less favourable treatment’
in access to education, services, employment
and transport. The DDA (2005) extends the Act
and places a new duty on the public sector ‘to
promote disability equality’. The overarching
policy framework for children’s services is
contained in the Children Act (1989) and, more
recently, the ‘Every Child Matters’ Green Paper
and the subsequent Children Act (2004). ‘Every
Child Matters’ lays out five key outcomes for
children and young people’s well-being:
• Being healthy: enjoying good physical and
mental health and living a healthy lifestyle.
• Staying safe: being protected from harm and
neglect and growing up able to look after
themselves.
• Enjoying and achieving: getting the most
out of life and developing broad skills for
adulthood.
• Making a positive contribution: to the
community and to society and not engaging
in anti-social or offending behaviour.
Photograph supplied by Epic Arts
• Economic well-being: overcoming socioeconomic disadvantages to achieve their full
potential in life.
50
Ordinary lives
The Children Act (2004) provides a framework
for improving services for disabled children and
their families. One of the primary aims is to
improve access to services through better coordination of departments and service providers.
To this end the Act:
• Makes provision for a Children’s
Commissioner for England.
• Places a duty on local authorities to make
arrangements to promote cooperation
between agencies and other appropriate
bodies (through Children’s Trust), and
provides a new power to allow pooling of
resources in support of them.
• Requires local authorities to appoint a
Director of Children’s Services and designate
a lead member for children’s services.
• Establishes provision for databases
containing basic information to enable better
sharing of information.
• Calls for the creation of an integrated
inspection framework and the conduct of
Joint Area Reviews to assess local areas’
progress in improving outcomes.
National policy
Legislation lays the groundwork for the rights of
disabled people and the duties of the state. It is,
however, only the beginning of national
government involvement in the rights of, and
services for, disabled children and their families.
Parliament publishes regulations and guidance on
how to implement legislation. It also develops
national strategies (see Appendix 3 for relevant
examples). These strategies have wide-reaching
effects on how services are planned and delivered.
In January 2005, the government published the
strategy ‘Improving the Life Chances of Disabled
People’. It sets out an ambitious programme of
action to create equal opportunity for all disabled
people and their families by 2025. The strategy
calls for ‘ordinary lives’ for disabled children and
their families. This is to be achieved by: ensuring
all children receive childcare and early education;
meeting the extra needs of families with disabled
children; and ensuring services are centred on
disabled children and their families, not on
processes and funding streams.
A new Office for Disability Issues (ODI) reporting
to the Minister for Disabled People will drive
forward the strategy. Accountability for the
implementation of the report will be through a
Ministerial Group, reporting on an annual basis
to the Prime Minister. The disability sector has
widely welcomed the strategy but there are
legitimate concerns about the actual
commitment of resources needed to reach the
vision. So far, the government has not
announced any additional expenditure or
programmes aimed at reaching the 2025 goal.
In addition to national strategies, central
government sets national standards. The
recently launched Children’s NSF contains
particular standards for services for disabled
children and their families. The NSF states that
disabled children and children with complex
health needs should ‘receive coordinated, highquality child and family-centred services which
are based on assessed needs, which promote
social inclusion and, where possible, which
enable them and their families to live ordinary
lives’.47 Again, although the standards have been
widely welcomed, there is concern that there are
no targets, milestones or ring-fenced money for
their implementation.
The mechanism to ensure implementation will be
nine independent inspectorates and
commissions, led by the Office for Standards in
Education (Ofsted), who will monitor the national
standards, along with children’s services more
generally. Assessment will focus on the five key
outcomes for children and young people listed
above. The draft assessement framework
proposes that two groups of vulnerable children
will be covered in detail in every joint area
review: children and young people in care and
children and young people with special needs
and/or disabilities.122 The integrated inspection
will feed directly into the comprehensive
performance assessment (CPA) for local
councils, by judging services for children and
young people. Whether the proposed regime is
enough to ensure a step change in the provision
of services for disabled children and their families
remains to be seen. Without additional funding,
many doubt that it will.
Professionals and policy-makers
A new Office for
Disability Issues is
to be established
to drive the
government’s
strategy for
disabled people
forward.
There have also been many other initiatives and
programmes (see Appendix 3 for a summary
table of recent government publications and
initiatives). One of the main concerns is that
many of the broader initiatives overlook disabled
children. The Audit Commission commented:
‘disabled children’s needs have too easily been
overlooked within broader initiatives and funding
streams, getting lost in the pressure to deliver
and improve public services as a whole. As a
user group, disabled children often speak with a
quiet voice and tend not to gain attention as
‘problem causers’.6 The government needs to
target disabled children and their families
explicitly in all mainstream children’s initiatives.
Every joint area review led by Ofsted will cover
children and young people with special needs
and/or disabilities.
51
Ordinary lives
Professionals and policy-makers
Local delivery
Box 17: Adam’s story
Too often disabled people feel they are fighting a
fragmented, complex and bureaucratic system
that does not put their needs at the heart of
service provision. Families with disabled children
have contact with an average of ten different
professionals, and visit hospitals and clinics over
20 times a year.47 Identifying and accessing
suitable services in a timely fashion is a major
problem for disabled children and their families.
The Audit Commission found: ‘for disabled
children, young people and their families,
navigating their way through the maze of services
is a frustrating, time-consuming, repetitive and
distressing process’.6 Figure 9 illustrates the
many agencies and departments disabled
children and their families need to deal with on a
regular basis. Information is not usually shared
across these different agencies. Moreover,
information on the wider population of disabled
children (i.e. including those who do not meet
eligibility criteria) is seldom collected, making
planning and commissioning extremely difficult.
Adam was born at full term, a healthy baby. At four weeks old he developed meningitis
and spent the next three months battling for survival. Adam is now 13 months old. The
effects of his meningitis are that he has cerebral palsy-spastic quadriplegia, is
epileptic, blind and is fed by naso-gastric tube.
Despite this, Adam is a relatively healthy child and is large for his age. It is currently
predicted that he will live until adulthood. Adam’s family are coming to terms with his
disability, but their life has been made far more difficult by fragmented and inflexible
service provision. He has had 315 different service based appointments in the last nine
months in over 12 different locations.
He has no control of his head, and was referred for a specialist buggy seven months
ago. The family has yet to receive their first assessment appointment. They have been
told that they will not be formally considered for aids and adaptations until he is three.
This is despite the fact that he is now heavy; father and grandmother have already
damaged their backs.
He has been referred for a gastronomy tube as the naso-gastric one is repeatedly being
pulled out, he is often sick, the family are not confident at re-inserting the tube and the
tape being used to attach the tube to his face is causing irritation and bleeding.
The family is now looking at moving into housing that can be adapted to meet Adam’s
needs. They require an assessment for aids and adaptations for the home. They have
been told that they will not be eligible for a Disabled Facilities Grant because the father
works. There will be no financial support for adaptation.
They have received no comprehensive information or support about their entitlements
to benefits, access to counselling, or national and local support groups. They had
limited access to a hospice, and support from the children’s community nursing team.
The family members report that the attitude of some professionals is still the most
54
‘Together from the start’
distressing thing they face.
Figure 9: Illustrative statutory structure*
HM Treasury
Dept. of Health
ODPM
Housing
DWP
Child Benefits
Direct Payments
DFG
DLA
DCMS
DfT
Leisure & sport
Transport
Health Trusts
Acute
Hospitals
incl. specialist
services eg.
neurology,
orthopaedics
Foundation
Hospitals
Local Authority
Community
PCTs
GPs
Specialist
nurse team
CAMHS
Health visitors
Counselling
OT
Children’s
services
Child
development
team
Adult’s
services
Cultural
services
Sports & recreation
Psychology
OT
services
Education
Access &
inclusion
Schools
Early years
Equipment
store
Health
partnerships
Children with
disabilities team
CAMHS
Field work
services
Advice &
assessment
Family support
Children’s
resources
Children’s
residential units
Children’s
Trust
Children’s Fund
Commissioning
voluntary sector
Development
& Renewal
Housing
EYDCP
Sure Start
Children’s Centres
Portage
Transport
SEN
Physiotherapy
Speech &
language
Environment
& Culture
Social Services
Mental
Health Trust
School nurses
SEN panel
Inclusive
education
Statement
monitoring
SEN & ICT
Equalities &
partnership
Parent’s advice
centre
Support for
learning
Disability team
Specific learning
difficulties
Language &
comms team
Sensory
impairment team
Extended
schools
*Only the agencies, departments and units that have involvement with disabled children or their families are shown. The diagram excludes all charities.
52
DfES
Ordinary lives
Another problem is that there are not enough
services for disabled children and their families.
A minority have access to statutory services,
such as childcare, leisure activities, equipment,
financial support, and short breaks. One of the
major causes of this is insufficient funding. This
in turn is because of the lack of ring-fenced
money, the low priority given to disabled children
by local authorities6, and the increasing number
of disabled children living in the community. In
the past, the majority of disabled people lived in
hospitals and health units. It is estimated that
98% of disabled children now live in a family
home.31 Local authorities are therefore
responsible for more disabled children than they
were when the NHS or social security system
funded residential care.
The lack of funding leads to eligibility criteria.
These criteria are confusing, illogical and likely to
change without notice.6 Lack of funding also
leads to unacceptably long waits for services,
equipment and adaptations. Assessments are
based on what is available instead of what is
needed. There are no statutory minimum
packages of support. Services are uncertain and
may be removed at any time depending on the
budget. Local authorities spend most of their
limited budget on very few children in a reactive
way, instead of providing a greater number of
early interventions.29
Often the only redress for families of disabled
children is the law. Many families end up at
tribunal or in the courts trying to secure provision
for their children and themselves. The worst
case scenario for the local authority is that they
have to provide what they are obliged to. Local
authorities pay no legal costs, so they can draw
out the process for as long as possible in order
to avoid provision.
During its review of services, the Audit
Commission did not find ‘secure and
comprehensive provision’ at any of the five sites
examined.6 Where services worked best, it was
because of strong leadership and local
champions who made the group a priority. The
Audit Commission concluded: ‘services for
disabled children are still Cinderella services, and
this disrupts children’s life chances and worsens
families’ quality of life. In this context,
improvement is critical’. 6
‘
Having to reiterate in detail the exact nature of
your child’s disability is painful when you are
working so hard to see him in a positive light. I
would like there to be a central database, or
‘passport’, which confirms that my son has
cerebral palsy for life and that I’m not lying.
‘
‘Please, just come and live and see what my life
is like for a week and tell me you can cope with
all this gobbledegook as well as coping with this
from day to day. There has been no reforms
that’ll either benefit the parent or the child in the
long run. No, because what we’re given is just
as soon taken away. Reformation of the system
is urgently required with access to a central
information bureau where parents can discuss
education, health social and disability concerns
with a real person, committed to reply to queries
within a structured time limit.’
Parent 58
Professionals and policy-makers
Parent
123
Many of the national strategies and initiatives
described above were developed to address
these issues. The Children Act (2004) sets out a
framework for improvement and co-ordination of
services. It does this by creating a single point of
responsibility for children’s services and by
recommending Children’s Trusts and data
sharing. Similarly, by using case files of disabled
children in all joint area reviews, the monitoring
system will ensure that this group are not
overlooked.
Current national initiatives present a unique
opportunity to turn this unacceptable situation
around. The biggest challenge is to raise the
profile of disabled children’s services and make
change happen at a local level.
Key workers
One way of addressing the fragmentation
families face is to provide ‘key workers’. Key
workers act as the main point of contact for a
family with a disabled child. They provide
information, facilitate communication with the
many service providers, and co-ordinate services
within the care package. A key worker may be a
professional already in contact with the family
(such as a social or health worker), or it may be
someone who works only as a key worker and
has a caseload of families to look after. There is
much experimentation with key workers at
present. Standards have only recently been
developed. The Early Support Programme
estimates that establishing key worker services
for children under three with complex and
multiple difficulties would require an equivalent of
one-and-a-half to two additional staff.124
The Audit
Commission did
not find ‘secure
and
comprehensive
provision’ at any
of the sites they
reviewed.
A number of evaluations show positive results.
Families report improved relationships with
service providers, fewer unmet needs and greater
family well-being.125 One study found that the
impact on access to services was beneficial, but
the social and emotional issues, as well as issues
around funding and equipment, were still
problematic.126 Even with all the evidence of
benefits, less than a third of families with severely
disabled children have a key worker.127
53
Ordinary lives
Professionals and policy-makers
‘She’s the health visitor and she’s our friend and
co-ordinator. If I need help, she’s the person I’d
turn to. I’d tell her anything. She helped me fill all
my forms in, we had so much in our
heads…Everything we had to find out we did
through her. She came and did everything at
home; it was a lot of help.’
Parent 128
Fewer than a third
of families with
severely disabled
children have a
key worker.
Based on the positive evidence, Every Child
Matters, the Children’s NSF and the Prime
Minister’s Strategy Unit all recommend key
workers. The Early Support Programme is
funding the development of new key worker
services on a range of models from 2004–2006.
This includes the development of existing home
visiting services, such as Portage (early years
education provision), to take on broader key
working responsibilities. Although the results
generated by key workers are positive, their very
necessity brings into question the entire
labyrinthine structure of local service delivery.
Charitable sector
Improving services
Research, training and dissemination of best
practice are vital to improve services provided
for disabled children and their families. Charities
(often funded by statutory sources) play a big
role in all three of these functions.
Good research and evaluation underpin service
development and are the starting point of
intelligent advocacy. The body of research
funded by the Joseph Rowntree Foundation
(JRF) informed much of the ongoing advocacy
around housing, costs of caring and levels of
support required by families. Additionally, the
research spearheaded the formation of ‘best
practice’ groups, such as the Shared Care
Network and Care Co-ordination UK. The
majority of social research on disabled children is
done by the two organisations described below.
The Norah Fry
Research Centre
undertakes
applied research
on services for
people with
learning
difficulties.
54
• The Norah Fry Research Centre (NFRC) at
the University of Bristol undertakes applied
research on services for people with learning
difficulties. Recent research on services and
support for disabled children and their
families has focused on multi-agency
working, residential schools, children who are
tube-fed, short breaks, Direct Payments and
transition. NFRC is committed to including
children, young people and adults with
learning difficulties as advisers and
researchers on its projects. It publishes all
findings in accessible formats and has
produced the ‘Plain Facts’ magazine and
tape series (summarising findings of JRF
funded research projects) for adults with
learning difficulties. The centre is not funded
by the university. It relies on external, largely
charitable, funding.
• The Social Policy Research Unit (SPRU) is
an autonomous research centre based within
the Department of Social Policy and Social
Work at the University of York. Its research
focuses on people who are made vulnerable
by poverty, unemployment, disability, chronic
illness or ageing. It aims to influence policy and
practice in order to improve the lives of these
people. Researchers are involved in developing
government policy (for example, two
researchers were members of the Working
Group on Disabled Children for the Children’s
NSF). The Children and Families team has
published research on disabled children’s
participation, multi-agency care co-ordination,
and the housing needs of families with
disabled children. It also undertook a number
of research projects as part of the JRF
programme of research on disabled children.
The Family Fund also contributes to research
by: maintaining its database of applicants;
commissioning research using the database
information; and disseminating its statistical
report of applicants on an annual basis. The
Fund’s database is one of the main sources of
data on disabled children and their families.
Research needs to be disseminated so that it
can be used for planning and service
development. This happens through
conferences, networks, newsletters, training
courses and guides and publications aimed at
professionals. There are a number of national
umbrella bodies that carry out these functions.
• The Council for Disabled Children (CDC)
regularly sends updates and information on
new research and best practice to the
Association of Directors of Social Services
(ADSS). CDC also uses ADSS for research
purposes, for example, to establish variations
in local practice and issues. It has published
a number of guides for professionals,
including those on Direct Payments (‘Direct
experience’), risk management (‘The dignity
of risk’, with Shared Care Network), early
support, parent participation (with Contact a
Family) and implementation of the DDA
(‘Come on in’). In Spring 2005 it ran regional
conferences to promote implementation of
the Children’s NSF and spread best
practices. Its team of seven spends around
half of its time in the field working with
schools, local education authorities, strategic
health authorities, primary care trusts and
parent groups, informing and updating them
on policy changes and best practice.
Ordinary lives
• Care Co-ordination Network UK (CCNUK)
is an umbrella organisation promoting and
supporting care co-ordination or key working
for disabled children and their families. Based
at the SPRU at University of York, it
influences national, regional and local policy
to promote best practice and to disseminate
information. It has developed a resource pack
aimed at managers and development
workers responsible for setting up key worker
services. It also created the national care
standards (‘New Standards for Key Working’).
• Shared Care Network (SCN) is an umbrella
body for shared care schemes. It does
regular research through its members and
collates and disseminates best practice
among them. It also produces guides for
those setting up shared care schemes and
for professionals (it produced ‘All kinds of
short breaks’ and co-wrote ‘The dignity of
risk’ with CDC).
• Sibs, the umbrella body for siblings groups,
runs workshops and conferences on sibling
issues throughout the UK, and produces
factsheets on sibling issues for siblings,
parents and professionals. It maintains a
website on sibling issues, works with service
providers to start local services for young
siblings, sets up networks of adult siblings,
and provides training for professionals.
In order to improve service delivery, a number of
charities manage statutory initiatives on behalf of
local statutory bodies:
• aMAZE in Brighton and Hove developed and
manages the local register of disabled
children. It works with service providers who
use the information to plan which services are
needed and where they should be located. It
is also actively involved in the development of
the local Children’s Trust.
• The Children’s Society managed the
administration of the Children’s Fund in
Liverpool. This involved sourcing, reviewing,
selecting and monitoring funding applications.
Another way of ensuring legislation is properly
implemented is through the legal system. Where
a local authority is failing to meet a statutory
obligation, various organisations can help
families take the case to tribunal or court.
• IPSEA and the Disability Law Service assist
families through the legal process of obtaining
services from local authorities.
• Contact a Family and Carers UK hold a
wealth of information, including data about
families and carers who have not received
services and benefits. By collating and working
through these cases they could identify
particularly poor performing local authorities
and develop an action plan for change.
Professionals and policy-makers
Advocacy
Advocacy focuses on changing national
legislation and policies, and local practices.
Those in the best position to advocate for
change are disabled children and their families.
Wherever possible they should be empowered
and supported to do this. There are a number of
charities working to this end:
• Circles Network runs a free of charge
Partners in Policy Making training programme
for disabled adults and parents of disabled
children. It aims to build community leaders
and enable disabled people to influence
public policy. It teaches participants about the
current system and how best to work with
professionals. A number of other local
organisations, such as Merseyside Partners,
also run Partners in Policy Making courses.
• The Children’s Society works with disabled
children in residential settings to provide them
with a voice and communicate their needs
and preferences. It ensured the involvement
of disabled children and young people in the
government’s Quality Protects initiative — it
consulted 340 disabled children and young
people and produced a set of CD-Roms
(‘Ask Us’) to communicate their message to
policy-makers.
• Contact a Family produces a guide to local
campaigning for parents’ groups. The guide
advises on information sources, legal rights
and strategies for how to campaign and who
to target. Funders wishing to support
parents’ groups in their advocacy efforts can
channel funds through Contact a Family.
The outcomes of national lobbying are notoriously
difficult to measure. Outcomes are usually the
result of a series of potentially unrelated activities
over a prolonged period of time. At the highest
level, the outcomes are changes in public opinion,
legislation and policy. Some examples of how
advocacy has worked are:
• The Council for Disabled Children (CDC) is
the umbrella body for the sector and is made
up of 35 elected members representing
national voluntary sector organisations,
national children’s organisations, specialist
organisations, professional associations,
parents groups and disabled people’s
groups. It lobbies on behalf of its members
and secured the inclusion of disabled children
as ‘children in need’ in the Children Act
(1989). This ensured their legal right to
services such as short breaks, assistance
with equipment and housing. More recently
CDC ensured the Disability Discrimination Act
(2005) covered schools.
The Council for
Disabled Children
is the voice of the
sector.
55
Ordinary lives
Professionals and policy-makers
• In Northern Ireland, sustained pressure from
parents and the coalition of charities Homes
Fit for Children resulted in the abolition of
the means-test for the Disability Facilities
Grant in 2004.
• Representatives from CDC, Contact a
Family and Mencap served on the advisory
groups of the Children’s NSF, the Early
Support Programme family and professional
packs and the Prime Ministers Strategy Unit’s
‘Improving Life Chances of Disabled People’.
Their input on behalf of parents, professionals
and disabled children has resulted in
government policy incorporating these views.
• These same three organisations hired a
short-term public affairs consultant in order to
raise the profile of disabled children during
2004 general election manifesto time. The
work led to a number of meetings with senior
government officials, and increased media
coverage for disabled children. These may
seem like small steps, but it is this type of
sustained lobbying that results in visibility of
the issues and subsequent action.
Photograph supplied by The Children’s Trust
• Based on its work with parents of children
with impaired hearing, the National Deaf
Children’s Society (NDCS) successfully
campaigned for screening of newly born
babies. The campaign together with the
advent of cheaper technology, led to the
government roll out of screening in 2001.
56
• Changing Faces successfully campaigned to
get disfigured people included in the DDA
(1995). They now run courses to train
employers in how to interview disfigured
people and a programme of disfigurement
life-skills for children, young people, adults
and families.
• Carers UK was integral to the drafting of the
Carers (Equal Opportunities) Act (2004). It
campaigned for the Act and then assisted in
its development.
The sector needs to increase its visibility by
speaking with a single voice and developing a
coordinated campaign to highlight the fact that
disabled children’s rights are not being upheld. A
comprehensive lobbying strategy and action
plan should be developed. In order to influence
government and society, stronger co-operation
and additional resources are needed. Donors
interested in supporting this activity can do so
through the Council for Disabled Children.
4
Society
In the social model of disability, the notion of
discrimination is key. Disabled people do not
face disadvantage because of their impairments
but experience discrimination through the way
society is organised. This includes failing to
make education, work, leisure and public
services accessible, failing to remove barriers of
assumption, stereotype and prejudice and failing
to outlaw unfair treatment in our daily lives.130 A
great deal needs to be done to achieve a society
where disabled children and their families are
supported and enabled to live ordinary lives.
‘We are invisible — we are not allowed to be
part of the community. It’s like we’re on planet
disabled and everyone else is from planet earth.’
Parent 58
The role of government
This report has shown that there is a lot to be
done in order to support disabled children and
their families. However, much of the necessary
framework is in place. The human rights of
disabled people in the UK are covered by the
Human Rights Act (1998) and the Disability
Discrimination Acts. These protect disabled
people against discrimination from access to
education, services, employment and transport.
The Disability Rights Commission (DRC) is an
independent body established by Parliament that
monitors the workings of the DDA and promotes
the rights of disabled people. The government
has also set out an exciting vision of society
where disabled people have full opportunities
and are included as equal members of society
(see Box 18). But we are not there yet. In order
to achieve a situation where families with
disabled children can live ordinary lives, we need
to change as a society.
‘
‘
Nobody should be
discriminated against for
who they are.
Disabled young person 6
The role of the charitable sector
Some organisations of disabled people
deliberately choose not to be charities or have
charitable status. This is because, as proponents
of the social model of disability, they believe that
disabled people are not charity cases to be pitied
and helped in a paternalistic way, but rather are
citizens with full rights to participate in society.
NPC respects this opinion. However, welldirected philanthropic resources can be used in
order to further the inclusion of disabled children,
so that at some point in the future, people with
impairments will no longer face disabling barriers
or experience discrimination. This places a
responsibility on donors and funders to make
sure that they direct their funds in a way that is
not paternalistic, patronising or reinforcing of
stereotypes and prejudice about disabled people.
Disabled people experience
discrimination through the way
society is organised.
Box 18: The government’s vision of society in 2025
‘By 2025, disabled people in Britain should have full opportunities and choices
to improve their quality of life and will be respected and included as equal members
of society.’
This vision reflects the fact that there should be equality of opportunity for all people,
irrespective of their needs. Different people will need different levels of support to
access these opportunities, but the overall aim should be for disabled people to be able
to take up opportunities to improve their own quality of life in a way that is comparable
29
Prime Minister’s Strategy Unit
with non-disabled people
Photograph supplied by Epic Arts
This section presents a picture of what needs
to change at a societal level in order for
disabled children to achieve their full
potential. In addition to all of the issues
described in Sections 1–3, it examines how
barriers of assumption, stereotype and
prejudice need to be overcome to enable
disabled children and their families to live
ordinary lives.
57
Ordinary lives
Society
NPC believes that the organisations identified in
this report meet these criteria. Supporting them
will contribute towards increasing the role of
disabled children in mainstream society. Many of
them have disabled children and their families
involved in running the organisation, setting its
priorities, or driving the direction of the
organisation. Others work to remove disabling
barriers to ensure that disabled children are able
to achieve their potential and play a larger role in
society as a whole.
Research shows that disabled children and their
families are subject to hurtful comments, staring
and verbal or physical abuse from members of
the public. For a society that considers itself to
be tolerant, this is shocking. Organisations such
as RADAR, Scope, Mencap and Disability
Alliance campaign to protect and promote the
rights of disabled people.
Photograph supplied by Oily Cart Theatre Company
Increasing the profile of disabled people in the
media, arts and sport and presenting positive
images of disabled adults and children is
necessary to overcome stereotypes, reduce
ignorance and intolerance. For example, the
magazine ‘Disability Now’ (published by Scope)
and the National Union of Journalists have
produced guidelines for journalists on how to
cover disability issues in a positive way.131
58
The charity Changing Faces ran a media
campaign and a poster campaign in schools to
increase understanding of disfigurement. Scope
runs public awareness campaigns and is
currently seeking funds to increase the profile of
disabled children in children’s books. This will
serve both to give disabled children positive
images they can relate to and also help break
down other children’s prejudice. Inclusive leisure
is also a great way to help non-disabled children
understand that disabled children enjoy the
same things as themselves (see relevant section
for details on these organisations).
Presenting
positive images
of disabled
people in the
media, arts and
sports can help
to overcome
stereotypes.
Ordinary lives
Conclusion and recommendations
Conclusion and recommendations
The government recognises many of these
problems and has launched and trumpeted many
initiatives. Yet the problems remain. Perhaps
current government programmes intervening
throughout the life course of disabled children will
bear fruit in the long run. The successful and
complete implementation of ‘Improving Life
Chances of Disabled People’, the Children’s NSF
and Change for Children would remove the need
for most voluntary action. However, the lack of
funding and persistence of problems over time
must counsel caution. Even with positive
government action, there is scope to do more.
The benefits from increased funding in the
public, private and charitable sectors are a call
to action. Results include:
• Improving the quality of life for disabled
children and their families.
• Reducing poverty levels among families with
disabled children.
• Making society more inclusive of disabled
children and their families.
Many charities are involved in producing these
results. Some specifically target disabled children,
while others come into contact with them through
more general child, carer or disability work. Most
of these charities receive some funding from the
government, but there is often scope to increase
or extend the reach of activities using private
funding. Donors and funders can have a real
impact for the following reasons:
• Statutory funding is limited. Local authorities
develop criteria to determine which needs will
be met in order to allocate resources between
competing priorities. In practice, this often
means catering for families when they have
reached breaking point, instead of offering
preventative services and support. Charities
play an important role in filling some of this
gap and in supporting families to lobby for
improved and expanded statutory services.
• Statutory funding focuses on proven services.
The charitable sector often drives innovation.
Independent funding can be used to allow
increased flexibility, experimentation and
evaluation.
Making the choice of which charity to fund can be
seen in terms of a trade-off between the different
outcomes created by different organisations
within the sector. This trade-off between reach
and certainty is illustrated in Figure 10. The further
down the triangle you move, the more children
and families will benefit, but with less certainty.
Figure 10: The funding trade-off
Child
Holidays • Education
Equipment • Leisure & play
communications
Family
Financial • Housing
Short breaks
Emotional support
Professionals
& policy-makers
Training • Research • Advocacy
Society
Media • Education
Campaigning
Reach
• Preventing family breakdowns and the
subsequent placement of disabled children in
residential or foster care.
• The general level of under-funding of the
sector is such that all virtually all
organisations within it face funding
challenges. The low priority of disabled
children at a local level means new
independent funding can have an impact.
Certainty of outcome
The level of services for disabled children and
their families is unacceptable. There are several
reasons to be concerned about this. From the
perspective of efficiency, it is not ideal. Family
breakdown leading to residential care of disabled
children massively increases the cost to the
taxpayer. Poor employment prospects of the
children, as well as their parents, damages the
economy, reducing tax receipts and increasing
costs. Actions to improve lives of disabled
children and their families can save money and
improve the economy. From the perspective of
social justice, it is alarming to note the poor
outcomes for a disabled child compared with
other children. The same can be said for families
with a disabled child compared with their
counterparts. From a humane perspective, the
loss of potential and poor quality of life
experiences available to disabled children and
their families is lamentable.
59
Ordinary lives
Conclusion and recommendations
For example, funding a holiday programme for
disabled children has definite outcomes for a
limited number of children who go on the holiday,
— as does funding wheelchairs for children. On
the other hand, funding a research centre,
umbrella body or campaign has far less certain
outcomes. However, over time, as these activities
influence public policy and society, they should
benefit a far larger number of disabled children
and families.
There is no correct part of the triangle to fund. It
would be wrong to always limit interventions to
just one layer. To borrow terminology from the
investment industry, a balanced portfolio would
include charities working in each segment of the
triangle. The important point is to make a more
informed choice of charities.
Many donors instinctively fund the upper section
of this triangle. Such donors should think about
supporting a broader range of charities, shifting
down the triangle. This necessarily involves
organisations that are one or more steps removed
from disabled children, as well as greater
uncertainty over what donations achieve.
However, this is compensated by the prospect of
greater impact. Appetite for risk plays a role here:
some funders will prefer certain outcomes. It is
important to stress that intervening to help a
family also benefits the child. Many services
benefit both children and families at the same
time. Similarly, ensuring good training for staff
leads directly to better services and support for
children. Restricting one’s focus to charities
working only at the top of the triangle risks being
overly naive and simplistic.
Photograph supplied by Epic Arts
This begs the question of what a balanced
portfolio might look like. It is difficult to generalise
about charities working in any layer of the triangle.
But it is possible to give indications of the type of
work, costs and outcomes of charities. Earlier
sections of the report have already done this.
Here, the report brings together a range of data
from actual charities and organisations working in
this field to help donors think what a balanced
portfolio might look like (see Table 6). For
individual donors however, we would stress that
taste and preference are important. NPC is in a
position to recommend charities and structure
portfolios that can improve the lives of many
disabled children and their families.
Table 6: Examples of activities at each layer of the triangle
60
Point of intervention
Activity
Cost
Benefits
Child
Placing staff and
trained volunteers in
local leisure facilities to
support disabled
children.
£42,000 can provide
a full summer of local
leisure and play
activities for 80
disabled children.
Improved access to
leisure for disabled
children gives them an
opportunity to make
friends and gain
confidence.
Developing and
performing theatre
specifically for
profoundly disabled
children.
£3,700 for a two day
workshop in a special
school.
Disabled children given
the opportunity to
interact and
communicate through
the arts.
Building circles of
friends around
disabled children.
£1,000 supports one
child to build a circle of
friends for a year.
£170,000 for
production and touring
costs to reach over
2,000 disabled children
in schools and the
community.
Disabled children have
friends and participate
in social activities.
Ordinary lives
Conclusion and recommendations
Table 6: continued
Point of intervention
Activity
Cost
Benefits
Family
Training parents to
work with
professionals and
policy-makers to
influence service
provision.
£120,000 can pay for
30 parents or disabled
adults to complete the
Partners in Policy
Making course.
Parents have the
confidence and
capacity to obtain
better services for their
family and influence
service provision so
that many others
benefit.
Providing detailed local
information and advice
to families with
disabled children. Put
them in contact with
other families with
disabled children for
emotional support.
£150,000 can support
a regional office for a
year supporting a
population of up to
85,000 disabled
children.
Families helped to
navigate complex
services and deal with
emotional stress.
Providing advice and
support to siblings of
disabled children, their
parents, and
professionals.
£23,000 a year will pay
for a full-time
information worker to
respond to enquiries
from siblings, parents
and professionals.
Emotional and social
support needs of
siblings of disabled
children are better
fulfilled.
Providing free
specialised legal
information, advice and
casework for disabled
people.
£30,000 pays for an
administrator. This
enables the legal team
to deal with more
cases. £50,000 pays
for a legal advisor
enabling around 400
additional clients to be
taken on.
Ensuring disabled
children and their
families get the
services and benefits
they are entitled to.
Giving parents a break
from round the clock
care by providing
holidays for disabled
children.
£25,000 pays for 72
weekend residential
breaks a year for
disabled children.
Parents get breaks
from intensive caring
routines. Children
make friends, develop
skills and confidence.
Involving disabled
people in carrying out
research into disability.
£250,000 over three
years covers cost of a
research project into
outcomes for disabled
children in residential
schools.
Disabled people
employed in research.
Developing a network
of disabled children
and supporting their
involvement in policy
making consultations.
£50,000 per annum
can pay for cost of
setting up and
promoting the work of
the network.
Knowledge and
experience of disabled
children feeds into and
influences policies that
affect them.
Professionals/policymakers
Rulings can affect
other disabled people,
for example, as a
result of a test case
many autistic people
are now eligible for a
higher rate of benefit.
Research findings
feed into policy and
practice.
61
Ordinary lives
Conclusion and recommendations
Table 6: continued
Point of intervention
Society
Activity
Cost
Benefits
Paying a team to
develop lobbying
coalition on disabled
children’s issues.
Could include
parliamentary lobbyist,
media and public
relations specialist.
n/d
Profile of issues
affecting disabled
children and their
families raised on the
political agenda. Public
awareness and
knowledge of disability
improved.
Working with local
authorities to set up
sibling services to
provide support,
reduce isolation and
teach coping
strategies.
£36,000 a year for
three years will provide
staff and project costs
to work with six local
authorities.
Sibling services
running in local
authorities providing
support and
information to siblings
of disabled children.
Inclusive arts
workshops for
children.
£3,600 can pay for a
five day arts workshop
for up to 30 disabled
and non-disabled
children.
Disabled children mix
with their peers and
gain in selfconfidence. Other
children learn to
understand and
communicate with
disabled children thus
overcoming prejudice
and building a more
inclusive society
Project to make
disabled children more
visible in children’s
books and magazines.
£500,000 over three
years for sustained
action and
collaboration with
publishers.
Disabled children
have positive role
models and other
children recognise
disabled children as a
part of society.
All of the activities within child, family and professionals/policy-makers
contribute to an impact at the societal level.
Activities with children, families
and professionals all contribute to
an impact at the societal level.
62
Ordinary lives
The analogy of a balanced portfolio has limits
because there is no common frame of reference
in terms of the value of the outcome of charities’
work. However, the analogy does focus attention
on the possibility of supporting more than one
type of charity and targeting different layers of
the triangle in order to have maximum impact.
For example, one might wish to support arts and
play activities for disabled children, but recognise
the financial problems faced by their families.
Funding a charity in each of the top two levels of
the triangle would be appropriate here.
Alternatively, one might care about the pervasive
poverty faced by many and wish to improve
lobbying efforts. Local lobbying by groups of
families as well as national lobbying of
government would be appropriate here, leading
to funding for charities in the second and third
layers of the triangle. Funding a single charity
can often create impact at more than one level
of the triangle. For example, by funding an
inclusive arts programme, one is able to
simultaneously benefit the disabled children who
participate as well as their non-disabled peers.
Greater societal impact is achieved the more
children are involved.
NPC has a number of general recommendations
for donors and funders (see Box 19). NPC also
found several factors that increase the likelihood
of success of charities in this sector:
• Disabled children and their families should be
closely involved in the organisation. They
should help set the agenda and develop
approaches.
Conclusion and recommendations
Box 19: General NPC recommendations to funders
• Unrestricted, long-term funding, including ongoing support to aid development,
sustainability and capacity-building.
• Full cost recovery by charities — see acevo and NPC’s report Full cost recovery:
A guide and toolkit on cost allocation.
• Surer funding arrangements for contracted-out services — see acevo and NPC’s
report Surer funding: Improving government funding of the voluntary sector.
Whether you are a hard-headed economist
interested in financial cost-benefit analysis, a
social justice campaigner concerned with the
unfair deck of cards dealt to disabled children
and their families, or simply a humanitarian who
wants to help improve life chances, the
organisations identified can make a difference.
NPC actively encourages donors to fund
charities in this area and it welcomes
discussions with donors on specific areas of
giving or the charities NPC would recommend.
NPC actively encourages donors to fund
charities in this area and it welcomes
discussions on recommended charities.
• Organisations should promote an inclusive
society wherever possible.
• Organisations should monitor and evaluate
their work.
• Organisations should collaborate with, learn
from and share information with others in
the sector.
Photograph supplied by Choices
This report sets out the extent of the barriers
facing disabled children and their families and
highlights what the important issues are. These
are really fundamental human rights, such as the
right to enjoy childhood and family life. Greater
awareness of the barriers for disabled children
should ensure that resources are guided
towards what disabled children really need: the
chance to fulfil their own potential without first
having to overcome disabling barriers.
63
Ordinary lives
Appendices
Appendices
Appendix 1: Summary of data on number of disabled children
Source & Year
Definition
Number of
children
% of child
population
Age group
Geographical
focus
Reanalysis of Families
and Children Study
2002, DWP11
Parents reported
that child had
either:
1.2 million
10%
Under 17
Britain
n/d
15% of
families
(i.e. not
% of all
children)
Under 16
and 16-18
in full-time
education
and living
at home
UK
n/d
Under 16
and 16-18
in full-time
education
and living
at home
Britain
Age 0-15
Britain
(i) Long-standing
illness or disability
resulting in extra
care needs or
affecting school
attendance.
(ii) SEN due to
physical
disabilities.
(iii) Intellectual
disability that had
significant impact
on schooling.
Families and Children
Study 2003, DWP132
Parents reported
that child had a
long-standing
limiting illness or
disability
Family Resources
Survey 2002/2003,
DWP13
DDA definition:
Long-standing
limiting illness or
disability affecting
one or more of the
activities listed in
Table 1
700,000
General Household
Survey 2002, ONS133
Longstanding
illness which limits
activity
772,920 a
General Household
Survey 2001, ONS10
Longstanding
illness which limits
activity
789,800 b
n/d
Age 0-15
Britain
General Household
Survey 1995, ONS134
Longstanding
illness which limits
activity
345,120 c
n/d
Age 0-15
Britain
1991 census
Limiting
longstanding illness
n/d
2.6%
Age 0-15
Britain
OPCS disability
surveys 1989135
Any restriction or
lack of ability to
perform activities
considered normal
for a person of
similar age, which
has resulted from
the impairment of a
structure or function
of the body or mind
320,000
with one
or more
disability
3%
Age 0-15
Britain
a
NPC calculation: (3,431,000 x 0.04
children age 0-4) + (8,157,000 x 0.08
children age 5-15) using data presented in
133
table 7.1 of reference
b
NPC calculation: (3,278,000 x 0.1
children age 0-4) + (8,028,000 x 0.09
children age 5-15) using data presented in
10
table 7.2 of reference
c
NPC calculation: (1,564,000 x 0.04
children age 0 -4 + 3,532,000) x (0.08
children age 5-15) using data presented in
134
table 7.1 of reference . NB: Large
discrepancy between 1995 and 2001/2002
may be due to change in weighting
methodology used in GHS in 1998.
64
7%
29
Ordinary lives
Appendices
Appendix 2: Relevant legislation
Legislation
Year
Relevant details
National
Assistance Act
1948
Required local authorities to provide residential accommodation
for elderly and disabled people. Also required that disabled people
should have access to the advice and guidance, occupational
activities and facilities needed to overcome communication or
mobility disabilities.
Chronically Sick
and Disabled
Persons Act
1970
Made the provisions of the National Assistance Act (1948) S29
mandatory rather then discretionary.
Local Authority
Social Services
Act
1970
Created Social Services Authorities. Social service departments
are permitted to undertake certain functions under this Act and
the list is regularly updated. This includes needs assistance and
provision or purchasing of care packages for disabled children.
Education Act
1981
Duty on LEAs to include pupils with special educational needs
into mainstream education where appropriate (where the needs
of the child are properly met, other children’s education is not
adversely affected, resources are efficiently used, and parents
are in agreement).
Health and Social
Services and
Social Security
Adjudication Act
1983
Under provisions within this Act, local authorities can charge for
both community care services and equipment where the recipient
of these can afford to repay them.
Disabled
Persons
(Services,
Consultation
and
Representation)
Act
1986
Right for disabled persons and their carers to request an
assessment of their needs. Only after an assessment of needs
has been undertaken by social services that a decision is made by social services - as to the quantum of service that should be
provided. Requires the local authority to take account of the ability
of a carer to provide or continue to provide care when deciding
what services to provide to the disabled person.
The Children Act
1989
Broad civil liberty provisions, in particular for disabled children or
children in need. Includes ‘the best interest principle’ and requires
local authorities to provide services for ‘children in need’ and their
families, including daycare, respite, assistance with equipment,
housing and general support. Where there is a disabled child the
local authority has an obligation to assist the family if they need
help in bringing up their child.
National Health
Service and
Community Care
Act
1990
Transferred budgets to local authorities.
Education Act
1993
Duty on LEAs to identify and assess children with special
educational needs. Qualified duty to secure education in ‘ordinary
school’ (same conditions as 1981 Act).
UNESCO
Salamanca
Statement
1994
Encourages inclusion in schools.
Disability
Discrimination Act
(DDA)
1995
Protects all disabled people from ‘less favourable treatment’ in
access to education, services, employment and transport.
65
Ordinary lives
Appendices
Appendix 2: continued
66
Legislation
Year
Relevant details
Carers
(Recognition and
Services) Act
1995
Requires Social Service Authorities to assess the needs of the
carer as a separate activity. Recognises the importance of carers
as the main providers of social care.
Community Care
(Direct
Payments) Act
1996
Gave councils the power to provide Direct Payments to individuals
who needed community care services.
Education Act
1996
Part 4 outlines the duty LEAs have to identify, assess and provide
for children requiring statements of SEN. This duty covers children
from the age of two, and before that if a child is identified by his or
her parents, the child health services or social services as having
special needs.
Human Rights
Act
1998
European Convention on Human Rights incorporated into British
domestic law through this Act. It states ‘no one shall be subjected
to torture or to inhuman or degrading treatment or punishment’.
Direct Payment
Act
1998
Places a duty on local authorities, in certain circumstances, to
make Direct Payments to enable people to obtain for themselves
the services that they are assessed as needing.
Care Standards
Act
2000
Established the National Care Standards Commission as the
regulator. Contains prescriptive standards aimed at every detail of
the care industry. Also stipulates the use of the Criminal Records
Bureau (CRB).
Carers
(Services and
Representation)
Act
2000
Gives carers the right to an assessment of their needs by the local
authority when it carries out an assessment of the person cared
for in respect of community care services (although not a right to
services).
Carers and
Disabled Children
Act
2000
Provides a new right for a carer to be assessed even if the
disabled person has not been assessed. Services to carers are
not defined in the Act, and the local authority may provide any
services which, in their view, will support the carer in their caring
role. In certain cases the Act allows carers and disabled children
to receive direct payment in lieu of the provision of services, to
receive vouchers for respite care, as well as giving them further
rights to assistants and services. Social services can charge for
services provided under this Act.
Health and
Social Care Act
2001
Gave councils the duty (rather than the power) to make Direct
Payments instead of providing direct services. This came into
effect on 1 April 2003.
Special
Educational
Needs and
Disability Act
(SENDA)
2001
Removes two out of three qualifications for placement in
mainstream school. LEAs must now include children with SEN
unless this prejudices the education of other children and there
are no reasonable steps which could be taken to prevent this
prejudice.
Education Act
2002
Encourages schools to provide and host a range of services,
including childcare, through the new Extended Schools
programme.
Ordinary lives
Appendices
Appendix 2: continued
Legislation
Year
Relevant details
Children Act
2004
Building on ‘Every Child Matters’ sets out reforms of children’s
services including:
• Children’s Commissioner for England.
• Duty on local authorities to promote co-operation between
agencies (through Children’s Trusts which bring together health,
education and social services within a single agency and will
enable multi-agency working).
• Duty on key agencies to safeguard children.
• Requirement on local authorities to appoint Director of
Children’s Services and designate Lead Members.
• Integrated inspection framework and joint area reviews.
Carers (Equal
Opportunities)
Act
2004
Seeks to give carers more choice and better opportunities to lead
a more fulfilling life by ensuring that carers receive information
about their rights under the 2000 Act. It also ensures that carers’
assessments consider leisure, training and work activities, and
provides for co-operation between local authorities and other
bodies, including housing, education and health, in relation to the
planning and provision of community care services that are
relevant to carers.
Disability
Discrimination
Act
2005
Amends the DDA of 1995 and place a new duty on the public
sector ‘to promote disability equality’ (this parallels the Race
Relations Amendment Act). It also brings people with HIV, cancer
and multiple sclerosis into scope.
67
Ordinary lives
Appendices
Appendix 3: Recent government initiatives
Initiative
Description
Publications
‘Improving the Life Chances
of Disabled People’
This report, which has been agreed as government policy, makes
recommendations across four key areas:
January 2005
• Independent living
Prime Minister’s Strategy
Unit
• Early years and family support
• Transition to adulthood
• Employment
‘Choice for Parents, the
Best Start for Children’
December 2004
HM Treasury
The government’s Ten Year Strategy for early years and childcare
was published alongside the Pre Budget Report (PBR). Its key
themes were:
• Choice and Flexibility
• Availability
• Quality
• Affordability
Every Child Matters: Change
for Children
December 2004
DfES
National Service Framework
for Children, Young People
and Maternity Services
September 2004
DoH
Child Poverty Review
July 2004
HM Treasury
Sets out how the five outcomes for children have been developed
into a national framework for 150 local programmes of change.
The framework aims to inform policy development, assessment,
inspection and delivery at the national and local level. A detailed
Outcomes Framework has been developed with the inspectorates
to inform monitoring of progress towards priority targets.
Sets out national standards for the first time for children’s health
and social care. It is a ten-year programme for improvement in
children’s health and well-being to be achieved through eight
standards. It is intended to lead to a cultural shift, resulting in
services being designed and delivered around the needs of
children and families.
Examines the welfare reform and public service changes
necessary to advance towards the goal of halving child poverty by
2010 and eradicating it by 2020. Sets out the key measures to
reduce child poverty in the medium to long-term through:
• Improving poor children’s life chances.
• Helping parents who can work into work.
• Providing financial support and tackling material deprivation.
‘Child poverty accord: supporting local authorities in their
contribution to the child poverty agenda’ published in November
2004 (out of Child Poverty Bill) sets out how the Treasury, LGA,
DWP and DfES intend to work together to tackle child poverty
68
Ordinary lives
Appendices
Appendix 3: continued
Initiative
Description
‘Removing Barriers to
Achievement’
Sets out the Government’s vision for the education of children with
special educational needs and disabilities. Four key areas:
Special Educational Needs
(SEN) Strategy
• Early intervention.
February 2004
DfES
• Removing barriers to learning – by embedding inclusive
practice to every school and early years setting.
• Raising expectations and achievement – by developing
teachers’ skills and strategies for meeting the needs of children
with SEN.
• Delivering improvements in partnership.
‘Every Child Matters’
September 2003
Green Paper
Building on the recommendations of the Laming Inquiry the green
paper sets out policies to protect children and to maximize the
potential of all children. Sets out the five key outcomes for children
and young people (see Section 3 for the five outcomes). Focuses
on four main areas:
DfES
• Supporting parents and carers.
• Early intervention and effective protection.
• Accountability and integration – locally, regionally and nationally.
• Workforce reform.
Aims to ensure that every child has the chance to fulfil their
potential by reducing levels of educational failure, ill health,
substance misuse, teenage pregnancy, abuse and neglect, crime
and anti-social behaviour among children and young people. Led
to the Children Act (2004) and Change for Children Programme.
‘Services for disabled
children. A review of services
for disabled children and
their families’
September 2003
Audit Commission
In-depth review of services which resulted in a vision of effective
services with four components:
• Services meet families’ needs.
• Families participate in everyday life.
• Services recognise that children grow and move on.
• Services recognise, recruit and develop the right people.
‘Beyond 2004 – A DCMS
Framework for Action on
Disability’
The framework sets out what the Department for Culture Media
and Sport, its Sponsored Bodies and wider sectors can do to
contribute to the goal of full equality for disabled people.
July 2003
DCMS
‘Together from the start’
May 2003
DoH, DfES
The Victoria Climbie Inquiry
January 2003
Lord Laming Inquiry
Government guidance which recognises that when children have
special needs and disabilities, it is important that these are
identified at an early stage and that identification leads directly to
effective early intervention and support for children and families.
For agencies working to assist disabled children and their families
from birth to age two.
A public inquiry was set up following the death of Victoria Climbie
in February 2000 and the subsequent murder conviction of her
carers in January 2001. The report sets our recommendations to
address the root causes of the failure to prevent Victoria’s death.
69
Ordinary lives
Appendices
Appendix 3: continued
Initiative
Description
‘Valuing People: A Strategy
for Learning Disability for the
21st century’
States that people with learning disabilities should receive services
to give them ‘fulfilling lives’. Services should be based on four
principles:
March 2001
• Choice
White Paper
DoH
• Inclusion
• Legal and civil rights
• Independence
Introduced Learning Disability Partnership Boards in every local
area which include representation of family carers and people with
learning disabilities.
Framework for the
Assessment of Children in
Need
April 2000
DoH
‘Working Together to
Safeguard Children’
December 1999
DoH, DfES, Home Office
‘Caring about Carers’
January 1999
DoH
70
Sets out the arrangements for deciding on the support a family
receives. The framework provides a systematic way of analysing,
understanding and recording what is happening to children and
young people within their families and the wider context of the
community in which they live.
It is currently being revised and the government is proposing to
introduce a Common Assessment Framework with the aim of
reducing the number of assessments faced by children and their
families by combining the assessments of the various agencies
into a single system.
Sets out how all agencies and professionals should work
together to promote children’s welfare and protect them from
abuse and neglect.
Recognises that disabled children are at an increased risk of
abuse and sets out measures to address this.
Sets out how the government will acknowledge the value of carers
in the community by offering information, support and care to the
carers. Includes plans for special provision to help carers in
employment and young carers as well as plans for legislation and
financial measures.
Ordinary lives
Appendices
Appendix 3: continued
Initiative
Description
Programmes
Sure Start
1999 - current
Government programme which aims to achieve better outcomes
for children, parents and communities by:
• Increasing the availability of childcare for all children.
• Improving health and emotional development for young children.
• Supporting parents.
524 Sure Start Local Programmes offer services to 410,000
children under four years of age – 29% of all poor children under
four across England. Expenditure of about £200 million a year.
Sure Start aims to identify pre-school children with special
educational needs and provide early intervention and support. The
general Sure Start grants include a strand for SEN and Disability.
Children’s Centres provide families with pre-school children in
disadvantaged areas integrated early education and childcare,
family support, health and advice on employment and training
opportunities. The ten year childcare strategy sets out the aim of
having 3,500 children’s centres by 2010.
Extended Schools refer to primary and secondary schools
providing study support, family and lifelong learning, parenting
support, childcare, some health and social care services, access
to ICT facilities and access to sports and arts facilities. Beyond this,
the government wants primary schools to develop an 8am - 6pm
wraparound childcare offer. The ‘Five Year Strategy for Children and
Learners’ (July 2004) sets out the Government’s vision that all
schools will become extended schools over time.
Early Support Programme
2002 – current
Programme involving the DfES, Sure Start and the DoH. Its purpose
is to improve the delivery of services to disabled children under
three and their families. Promotes service development in
partnership with education, health and social services, voluntary
organisations and service users themselves. Early Support is putting
into practice the principles outlined in ‘Together from the start’.
Developed comprehensive toolkits for professionals and families
which the government has committed to spreading to all local
authorities and Children’s Trusts. The DfES has provided £13
million to support the development of services in 2002-2006.
Quality Protects
April 1999 - March 2004
Connexions
A children’s services funding initiative (£885 million over five years)
with specific funds for services for disabled children and their
families (£60 million over the five years). The main objective for
disabled children was to ensure that they gain maximum life
chance benefits from educational opportunities, health care and
social care, while living with their families or other appropriate
settings in the community where their assessed needs are
adequately met and reviewed.
Support service available to all 13-19 year olds and to 14-25 year
olds with learning disabilities in England. The service aims to
provide integrated advice, guidance and access to personal
development opportunities for this group and to help them make a
smooth transition to adulthood and working life. Connexions can
assist with any issue of concern including careers, learning, health,
housing, rights, relationships, and finances. Young people can
access the service through local Connexions Partnerships.
71
Ordinary lives
Appendices
Appendix 3: continued
Initiative
Description
Funds
Children’s Fund
Programme to stimulate multi-agency working and partnership
between voluntary, statutory and community sectors and young
people. Aimed at children aged 5-13 and connects government
initiatives that address social exclusion amongst children/young
people and their families. Funding provided centrally but
administered locally. Funding is based on the number of children in
poverty in each area and the waves were phased so that areas of
most need received funding first.
Largest national programme being delivered by the Children and
Young People’s Unit. Initial allocation of £350 million from
Spending Review 2000; allocated £450 million from the Spending
Review 2002.
Carers Grant
DoH
Introduced in 1999, the grant forms part of the Government’s
strategy for carers, set out in ‘Caring about Carers’. It is designed
to stimulate diversity and flexibility in provision of breaks for carers
or direct services to carers to support them in their caring role. In
2005/2006 the Carers Grant will increase by £60 million to £185
million and will continue at this level until 2008.
Learning Disabilities
Development Fund (LDDF)
Fund to support the implementation of ‘Valuing People’ which sets
out a programme to improve services for people with learning
disabilities. £41.6 million to be distributed between the 303 PCTs in
2005/2006 with an additional £700,000 announced in March 2005.
Early Years and Childcare
Grant
One component of the Early Years and Childcare Grant allocated
to local authorities is the ‘SEN and Disability Development Grant’.
This strand brings together three previous strands of funding —
SENCO training, disability childcare and the low incidence
disability grant — into a single ring fenced budget. The new grant
has three strands:
• SENCO training.
• Early Intervention.
• SEN/Disability and childcare.
It is intended to be flexible and it will be possible to move
resources from one element to another as long as some basic
conditions are met. The SEN and Disability Strand of the Grant
was £18 million in 2003/2004.
Local Network Fund for
Children and Young People
DfES
Direct Payments
Development Fund
72
The aim of this fund is to help children achieve their potential by
investing in the activities of local community and voluntary groups
working for and with children and young people aged 0-19. It was
set up for three years with a total budget of £70 million. The 2002
spending review extended the Fund for a further two years until
March 2006 with an additional £80 million. Grants are made under
four themes: aspirations and experiences, economic
disadvantage, Isolation and access, and, children’s voices.
£9 million over three years targeted at national, regional and local
voluntary organisations, in partnership with local councils, to
enable them to play a significant role in the development and
promotion of Direct Payments.
Ordinary lives
Appendices
Appendix 3: continued
Initiative
Description
Parenting Fund
The 2002 Spending Review announced the creation of the
Parenting Fund, worth £25 million over three years, to develop
parenting support. It will go directly to the voluntary and
community sector to support parenting and parenting
organisations. The government intends to put supporting parents
and carers at the heart of its approach to improving children’s
lives, where support is needed or wanted.
DfES
Safeguarding Children and
Supporting Families
DfES
Strengthening Families
DfES
The aim of this fund is to strengthen and further develop the
partnership between the DfES and the voluntary and community
sector. Funding supports innovative projects of national
significance that complement statutory services, and help secure
and promote high-quality children’s social care in England.
The aim of this programme is to support and develop activities
which enable families to get access to information, help and
advice. The programme has been formed by the merger of the
Marriage and Relationship Support (MARS) and Family Support
(FSG) grant programmes, following the creation of the DfES
Children, Young People and Families Directorate.
73
Acknowledgements
We are very grateful
to the following
individuals — and
their organisations —
for their input into this
report:
74
Alex Rankin
Whizz-Kidz
Adrienne Cronin
PSS Liverpool
Andrew Ross
The Children’s Trust
Angela Woodley
KIDS
Brenda Farrell
Barnardo’s North West Fostering Project
Carolyn Fullard
National Blind Children’s Society
Chris Elwell
Half Moon Theatre
Chris Munday
Children’s Trust Manager, Tower Hamlets
Christine Lenehan
Council for Disabled Children
Christine Osborne
The Children’s Society
Clare Gent
NCH
Clare Ledger
NCH
Colin Heaney
Choices project, Merseyside Youth Association
Colin Pryor
Merseyside Partners
David Abbott
Norah Fry Research Centre, University of Bristol
Denise Allan
Merseyside Partners
Elisabeth Swingwood
Syndromes Without a Name
Emma Vernon-Harcourt
Epic Arts
Francine Bates
Contact a Family
Gerald O’Shaughnessy
Tower Project
Imelda Redmond
Carers UK
Jan Morrison
Barnardo’s
Jo Palmer
Contact a Family North West
John Hogan
Liverpool Children’s Fund/The Children’s Society
Julia Erskine
Merseyside Partners
Karen Naya
Healthcare Commission
Katherine Sullivan
Scope
Katrina McNamara-Goodger
Department of Health
Kelly Rudd
Choices project, Merseyside Youth Association
Kevin Woods
Department for Education and Skills
Lesley Campbell
Mencap
Linda Clarke
Disability Law Service
Linda Ward
Norah Fry Research Centre, University of Bristol
Lizzy Boycott
Choices project, Merseyside Youth Association
Mahmoud Hasan
APASENTH
Mary McBride
Contact a Family North West
Mandy Neville
Circles Network
Marion Lowe
Family Fund
Maura Farrelly
Tower Hamlets Local Authority
Ordinary lives
Michael Spink
Parent
Michelle Gillaland
Epic Arts
Monica McCaffrey
Sibs
Miranda Parrot
Sibs
Parul Begrum
The Children’s Society, Tower Hamlets
Patricia Sloper
SPRU – University of York
Paul Rodrigues
Merseyside Access to Play (MAP)
Penny Dean
The Children’s Society
Pip Pinhorn
Toyhouse Libraries Association of Tower Hamlets
Richard Mills
National Autistic Society
Richard Muncaster
Scope
Robyn Kemp
House on the Hill, NCH
Ronny Flynn
Racial Equality Unit
Ruth Owen
Whizz-Kidz
Sam Brier
KIDS
Sean Barrett
Liverpool Crossroads
Sharon Sullivan
Parent’s Advice Centre, Tower Hamlets
Sheila Eden
Tower Hamlets PCT
Simon Roach
Spark Centre, Barnardo’s
Susan Daniels
National Deaf Children’s Society
Tania Shaikh
Attlee Foundation
Tim Webb
Oily Cart
Tracy Brunt
Oily Cart
Vicky Jones
Shared Care Network
Wendy Buchanan
Circles Network
Acknowledgements
Additionally we are heavily indebted to the following individuals
who provided us with valuable input after taking the time and care
to read the consultation version of this report:
Andrew Ross
The Children’s Trust
Christine Lenehan
Council for Disabled Children
Elaine Ponte
Sainsbury’s Family Charitable Trusts
Francine Bates
Contact a Family
Linda Ward
Norah Fry Research Centre, University of Bristol
Marion Lowe
Family Fund
Matthew Williams
Sainsbury’s Family Charitable Trusts
Philippa Russell
National Children’s Bureau
Susan Daniels
National Deaf Children’s Society
Vicky Jones
Shared Care Network (reviewed the section on short breaks)
75
References
1
Larkin, P. (1988) Collected Poems. London: The Marvel Press
and Faber and Faber.
2
Casswell, D., ed. (2004) The Contact a Family Directory.
Specific conditions, rare disorders and UK family support
groups. 2004 ed. Contact a Family.
21
Council for Disabled Children and End Child Poverty
Campaign (Undated) Disabled children, their families and child
poverty.
22
Department of Health (Undated) Getting the right start:
National Service Framework for Children. Emerging Findings.
3
Mulcahy, F. (Undated) Position Paper on Definition of Disability.
Disabled Peoples’ International.
23
Audit Commission (2002) Special Educational Needs. A
mainstream issue.
4
World Heath Organization (2002) Towards a common
language for functioning, disability and health.
24
5
John, A. and Wheway, R. (2004) Can play will play. Disabled
children and access to outdoor playgrounds.
Marlow, N., Wolke, D., Bracewell, M. and Samara, M. (2005)
Neurologic and developmental disability at six years of age
following extremely preterm birth. New England Journal of
Medicine, 352(1): p. 9-19.
6
Audit Commission (2003) Services for disabled children. A
review of services for disabled children and their families.
25
7
Contact a Family website, www.cafamily.org.uk/index.html
[14 February 2005]
Wood, N., Marlow, N., Costeloe, K., Gibson, A.T. and
Wilkinson, R.A. (2000) Neurologic and developmental disability
following extremely preterm birth. New England Journal of
Medicine, 10(343): p. 378-84.
26
8
Department for Work and Pensions Information and Analysis
Directorate (2004) Press Release: Estimate of the number of
disabled children in Britain covered by the Disability
Discrimination Act (1995).
Wood, N., Hennessey, E.M., Marlow, N., Costeloe, K.,
Gibson, A.T. and Wilkinson, A.R. (2003) The EPICure study:
growth and associated problems in children born at 25 weeks
of gestational age or less. Archives of Disease in Childhood
Fetal and Neonatal, 88(6): p. F492-F500.
9
Personal communication with Higginbottom, N., Disability and
Carers Directorate, Department of Work and Pensions, (2004)
27
Personal communication with Marlow, N, University of
Nottingham (2005).
10
Walker, A., O’Brien, M., Traynor, J., Fox, K., Goddard, E. and
Foster, K. (2002) Living in Britain. Results from the 2001
General Household Survey.
28
Bliss website,
www.bliss.org.uk/textpagebuild.php?texttype=howbliss_camp
aigning [26 January 2005]
11
Emerson, E. and Hatton, C. (2005) The Socio-Economic
Circumstances of Families Supporting a Child at Risk of
Disability in Britain in 2002. Lancaster University.
29
Prime Minister’s Strategy Unit (2005) Improving the Life
Chances of Disabled People.
30
12
Gordon, D., Parker, R., Loughran, F. and Heslop, P. (2000)
Disabled Children in Britain: A Reanalysis of the OPCS
Disability Survey: The Stationery Office.
Russell, P. (2004) UK Services for families with a disabled
member: an overview of the legislation and policy.
Unpublished.
31
13
Department for Work and Pensions (Undated)
Family resources survey. United Kingdom 2002-03.
Kagan, C., Lewis, S. and Heaton, P.,
www.jrf.org.uk/knowledge/findings/socialcare/scr538.asp [26
January 2005]
14
Department of Health (2001) Valuing People. A New Strategy
for Learning Disability for the 21st Century. White Paper.
32
Department of Health and Department for Education and
Skills (undated) Disabled children in residential placements.
15
Family Fund (2004) Family Fund Annual Activity Report
2003-2004.
33
16
Heaton, J., Noyes, J., Sloper, P. and Shah, R. (2003)
Technology dependent children and family life. Research
Works, Social Policy Research Unit, University of York, (200302).
National Working Group on Child Protection and Disability
(2003) “It doesn’t happen to disabled children”. Child
protection and disabled children.
34
Contact a Family (2004) Factsheet: Holidays, play and leisure.
35
Action for Leisure and Contact a Family (2003) Come on In!
Developing inclusive play and leisure services.
36
Murray, P.,
www.jrf.org.uk/knowledge/findings/socialcare/712.asp
[January 20 2005]
37
Shared Care Network (2004) Share the Care Week.
38
Shelley, P. (2002) Everybody here? Play and leisure for
disabled children and young people. A contact a family survey
of families’ experiences in the UK.
39
Sharma, N. and Dowling, R. (2004) Postcards from home.
The experience of disabled children in the school holidays.
Barnardo’s.
17
Ludvigsen, A. and Morrison, J. (2003) Breathing space.
Community support for children on long-term ventilation.
Barnardo’s.
18
Office for National Statistics website,
http://www.statistics.gov.uk/StatBase/Expodata/Spreadsheets
/D8257.xls [February 2005]
19
Joy, I. (2005) Valuing short lives. New Philanthropy Capital.
20
Nessa, N. (2004) Chapter 10 Disability in The Health of
Children and Young People. Office of National Statistics.
76
Ordinary lives
40
Finch, N. (2001) Young people with a disability & sport. Sport
England.
41
Personal communication with Hogan, J., Liverpool Children’s
Fund (2004)
42
Crooks, A., May, P. and McGinlay, K. (2004) Free2pee lifting
the lid on bad access. Scope.
43
Office of the Deputy Prime Minister (2003) Developing
accessible play space. A good practice guide.
44
Circles Network (2003) Circles Network Annual Report. April
2002-March 2003.
45
Murray, P.,
www.jrf.org.uk/knowledge/findings/socialcare/712.asp [20
January 2005]
46
Lewis, E. (2001) Evaluation of the benefits of recreational
holidays for young people in public care. National Children’s
Bureau.
47
Department of Health and Department for Education and
Skills (2004) National Service Framework for Children, Young
People and Maternity Services.
48
Contact a Family (2004) Factsheet: Aids, equipment and
adaptations.
49
National Deaf Childrens Society (2004) Factsheet: Digital
Hearing Aids.
50
Personal communication with Rankin, A., Whizz-Kidz (2005)
51
Lawton, D. (1995) The numbers and needs of non-mobile
children. A report for Whizz-Kidz.
52
Ace Centre Advisory Trust website,
www.specialschool.org/webforia/spsch31stdec/%7B0F201C4
A-E1A2-4E6D-9279-0FC8D088CA0A%7D_1065_635.htm [14
Feb 2005]
53
Department of Transport (2003) Public Transport Statistics.
54
Department for Education and Skills and Department of
Health (2003) Together from the start - practical guidance for
professionals working with disabled children (birth to third
birthday) and their families.
References
61
Contact a Family (2004) No Time for Us. Relationships
between Parents who have a Disabled Child: A survey of over
2,000 parents in the UK.
62
Tozer, R. (1999) At the double: Supporting families with two or
more severely disabled children. Findings. Joseph Rowntree
Foundation.
63
Lawton, D. (1998) Complex numbers: Families with more than
one disabled child. Findings. Joseph Rowntree Foundation.
64
Department for Work and Pensions (2004) Households Below
Average Income 2002/3.
65
Chamba, R., Ahmad, W., Hirst, M., Lawton, D. and Beresford,
B. (1999) On the edge: Minority ethnic families caring for a
severely disabled child. Joseph Rowntree Foundation.
66
Dobson, B. and Middleton, S. (1998) Paying to care: The cost
of childhood disability. Joseph Rowntree Foundation.
67
Jarbrink, K., Fombonne, E. and Knapp, M. (2003) Measuring
the Parental, Service and Cost Impacts of Children with
Autistic Spectrum Disorder: A Pilot Study. Journal of Autism
and Developmental Disorders, 33(4): p. 395 - 402.
68
Woolley, M. (2004) Income and Expenditure of Families With a
Severely Disabled Child. Family Fund.
69
Jarbrink, K. and Knapp, M. (2001) The economic impact of
autism in Britain. Autism, Vol 5(1): p. 7 - 22.
70
BBC News,
http://news.bbc.co.uk/2/hi/uk_news/wales/south_east/40922
97.stm [17 January 2005]
71
BBC News,
http://news.bbc.co.uk/1/hi/england/kent/4169887.stm [17
January 2005]
72
Contact a Family (2004) Flexible Enough? A survey of over
900 parents in the UK.
73
Social Exclusion Unit (2004) The impact of government policy
on social exclusion among children aged 0-13 and their
families.
74
Social Exclusion Unit (2004) Breaking the Cycle: Taking stock
of progress and priorities for the future.
55
Department for Education and Skills (2003) Report of the
special schools working group.
75
Kempson, E. (2002) Over-indebtedness in Britain. Department
for Trade and Industry.
56
Department for Education and Skills (2004) Removing barriers
to achievement. The Government’s strategy for SEN.
76
57
Contact a Family (2004) No Time for Us. Relationships
between Parents who have a Disabled Child: A survey of over
2,000 parents in the UK.
Harrison, J. and Woolley, M. (2004) Debt and Disability: The
impact of debt on families with disabled children. York:
Contact Family & Family Fund.
77
Department for Work and Pensions,
http://www.dwp.gov.uk/asd/asd1/dla/dla_quarterly_statistics_
aug04.asp [14 February 2005]
78
House of Commons Committee of Public Accounts (2004)
Getting it right, putting it right: Improving decision-making and
appeals in social security benefits. Twelfth Report of Session
2003-04.
79
Preston, G. (2005) Helter Skelter: Families, disabled children
and the benefit system. London School of Economics.
58
Sharma, N. (2002) Still missing out? The case studies. Ending
poverty and social exclusion: messages to government from
families with disabled children. Barnardo’s.
59
Department of Health (2002) Health Survey for England.
60
Marsh, A., McKay, S., Smith, A. and Stephenson, A. (2001)
Low income families in Britain. Work, welfare and social
security in 1999. Policy Studies Institute.
77
Ordinary lives
References
80
BBC News, http://news.bbc.co.uk/1/hi/uk/4394675.stm [6
April 2005]
102 Personal communication with Jones, V, Shared Care Network
(2005)
81
Department of Social Services (1998) First findings from the
disability follow-up to the FRS.
82
HM Treasury (2004) Child Poverty Review.
103 Prewett, B. (1999) Short-term break, long-term benefit: Using
family-based short breaks for disabled children and adults.
University of Sheffield.
83
HM Treasury (2004) Choice for parents, the best start for
children: a ten year strategy for childcare.
84
Daycare Trust (2001) Ambitious for all, rising to the childcare
challenge for children with disabilities and special needs.
85
National Audit Office (2004) Early Years: Progress in
developing high quality childcare and early education
accessible to all.
86
Bates, F., Williams, J., Lamb, B. and Lenehan, C. (2004)
Disabled children’s needs, in The Guardian.
87
Scope (2003) The Direct Approach: Disabled people’s
experience of direct payments. Summary of findings and key
recommendations.
88
Carlin, J. and Lenehan, C. (2004) Direct experience: a guide
for councils on the implementation of Direct Payments in
children’s services. Council for Disabled Children.
89
Commission for Social Care Inspection (2004) Direct
Payments: What are the barriers?
90
Heath, F. and Smith, R. (2004) People, not budgets. Valuing
disabled children. Centre for Policy Studies.
91
Disability Law Service (2004) Brochure.
92
Beresford, B. and Oldman, C. (2002) Housing Matters.
National evidence relating to disabled children and their
housing. Joseph Rowntree Foundation.
93
Homes Fit for Children (undated) Open your eyes.
94
Office of the Deputy Prime Minister (1998) An evaluation of the
disabled facilities grants system.
95
Disability Now website,
www.disabilitynow.org.uk/people/parents_voice/parents_voice
_feb.htm [4 February 2005]
96
Disability Now website,
www.disabilitynow.org.uk/search/z04_06_Ju/community.shtml
[2 February 2005]
104 Carlin, J., Morrison, J., Nawaz, S. and Bullock, J. (2004) All
Kinds of Short Breaks - A guide to providing a range of quality
services to disabled children and young people. Shared Care
Network.
105 Personal communication with Kemp, R., NCH 2005
106 Department of Health Social Services Inspectorate (1998)
Removing Barriers for Disabled Children: Inspection of
Services to Disabled Children and their Families.
107 Department of Health (2003) Making Change Happen: The
Government’s Annual Report on Learning Disability 2003.
108 Office for National Statistics (2004) Children in Need in
England: Results of a survey of activity and expenditure as
reported by Local Authority Social Services’ Children and
Families Team for a survey week in February 2003: Local
Authority tables and further national analysis.
109 Tarleton, B. and Macaulay, F. (2002) Better for the Break?
Support for children and teenagers with autistic spectrum
disorders and their families. Norah Fry Research Centre.
110 Abbott, D., Morris, J. and Ward, L. (2001) The best place to
be? Policy, practice and the experiences of residential school
placements for disabled children. Norah Fry Research Centre.
111 Flynn, R. (2002) Short breaks: Providing better access and
more choice for Black disabled children and their parents.
The Policy Press & Joseph Rowntree Foundation.
112 Prewett, B. (2000) Committed to caring: The view of short
break carers for children who are ‘hard to place’. Joseph
Rowntree Foundation.
113 Heslop, P. and Robinson, C. (2004) Better Rewards: The
issues, costs and effectiveness of employing salaried support
carers for short break care.
114 Department of Health (1998) Quality Protects. Objectives for
Social Services for Children. Shared Care Network.
115 Shared Care Network website,
www.sharedcarenetwork.org.uk/scn/dynamic/scn9.shtml [3
December 2004]
97
Joseph Rowntree Foundation press release (1998) Poor
housing adds to strains on disabled children and their families.
98
Mencap (2003) Breaking Point. A report on caring without a
break for children and adults with severe or profound learning
disabilities.
117 Personal communication with Ross, A., The Children’s Trust
(2004)
99
Mencap (2001) No ordinary life.
118 Personal communication with Farrell, B., Barnardo’s NW
Fostering Project (2004)
100 Spink, H. (2004) Henrietta’s Dream: Hodder and Stoughton.
Reproduced by permission of Hodder and Stoughton Limited.
101 Robinson, C. (2003) Short Breaks in the South West of
England for Disabled Children and Adults with Learning
Disabilities. South West Learning Disability Network.
78
116 Choices (2004) The Choices Project Weekend Break Report.
119 Sibs website, www.sibs.org.uk/ [4 February 2005]
120 HMSO (1991) The Children Act Guidance and Regulations.
121 Contact a Family (2003) Factsheet: Siblings.
Ordinary lives
References
122 Ofsted (2004) Every child matters: inspecting services for
children and young people. A discussion paper.
123 Muir, J. (2004) Gift horse with rotten teeth, in Society
Guardian.
124 Department for Education and Skills and Department of
Health (2004) Early Support Professional Guidance. Section 6:
Keyworking, key workers and care co-ordination.
125 Greco, V., Sloper, P. and Barton, K. (2004) Care coordination
and key worker services for disabled children in the UK.
University of York.
126 Townsley, R., Abbott, D. and Watson, D. (2003) Making a
difference? Exploring the impact of multi-agency working on
disabled children with complex health care needs, their
families and the professionals who support them. Findings.
Norah Fry Research Centre.
127 Greco, V. and Sloper, P. (2004) Care coordination and key
worker schemes for disabled children: results of a UK wide
survey. Child: Care, Health and Development, 30: p. 13-20.
128 Department for Education and Skills (2004) Professional
Guidance, Early Support Programme.
129 HM Government (2003) Every child matters.
130 Disability Rights Commission website,
www.drc-gb.org/citizenship/howtouse/socialmodel/index.asp
[4 February 2005]
131 National Union of Journalists and Disability Now (Undated)
Hacked off: a journalist’s guide to disability.
132 Barnes, M., Anderson, T., Chaplin, J., Collins, D., Phillips, M.,
Groben, S., Willitts, M., Morris, S., Noble, J. and Sneade, I.
(2004) Families and children in Britain. Findings from the 2002
Families and Children Study (FACS). Department for Work and
Pensions.
133 Rickards, L., Fox, K., Roberts, C., Fletcher, L. and Goddard,
E. (2004) Living in Britain. No 31 results from the 2002
General Household Survey. HMSO.
134 Rowlands, O., Singleton, N., Maher, J. and V., H. (1997) Living
in Britain. Results from the 1995 General Household Survey.
HMSO. The Stationery Office.
135 Bone, M. and Meltzer, H. (1989) OPCS surveys of disability in
Great Britain. Report 3. The prevalence of disability among
children. HMSO.
79
Other
publications
Community
•
•
•
•
Grey matters: Growing older in deprived areas (2004)
Side by side: Young people in divided communities (2004)
Local action changing lives: Community organisations tackling poverty and social exclusion (2004)
Charity begins at home: Domestic violence (2003)
Education
•
Making sense of SEN: Special Educational Needs (2004)
Health
•
•
•
•
•
Valuing short lives: Children with terminal conditions (2005)
Out of the shadows: HIV/AIDS in Burundi, Democratic Republic of Congo and Rwanda (2005)
The hidden assassin: Cancer in the UK (2004)
Caring about dying: Palliative care and support for the terminally ill (2004)
Rhetoric to action: HIV/AIDS in South Africa (2003)
Other Research
•
•
•
•
Surer funding: Improving government funding of the voluntary sector (2004, acevo)
Full cost recovery: A guide and toolkit on cost allocation (2004, acevo)
Just the ticket: Understanding charity fundraising events (2003)
Funding our future II: A manual to understand and allocate costs (2002, acevo)
Forthcoming
publications
•
•
•
•
•
Prisoners and ex-prisoners
Truancy and exclusion
Refugees and asylum seekers
Mental health
Education overview
Our research produces evidence-based analysis and guidance on
individual charities, sectors and themes, shedding light on where and how funds
can be targeted. To date, the main focus of our research has been in the UK.
To order please call Central Books: 0845 458 9910
or visit www.philanthropycapital.org
Notice and Disclaimer
• The content of this report is confidential and is the copyright of New Philanthropy Capital. (“NPC”).
• You may copy this report for your own personal use and research or that of your firm or company. You may not republish, retransmit, redistribute or otherwise make the report available to any
other party without NPC’s express prior written consent.
• NPC shall not be liable for loss or damage arising out of or in connection with the use of this report. This is a comprehensive limitation of liability that applies to all damages of any kind, including
(without limitation) compensatory, direct, indirect or consequential damages, loss of data, income or profit, loss of or damage to property and claims of third parties.
• Notwithstanding the foregoing none of the exclusions and limitations in the clause are intended to limit any rights you may have as a consumer under local law or other statutory rights which
may not be excluded nor in any way to exclude or limit NPC’s liability to you for death or personal injury resulting from NPC’s negligence or that of its employees or agents.
New Philanthropy Capital (NPC) is a charity that advises all
types of donors on how to give more effectively. Our aim is to
increase the quantity and quality of resources available to the
charitable sector.
We do this through a combination of published research and
tailored advice. Our research identifies charities, large or small,
that are tackling problems in communities, education and
healthcare in the UK, and achieving excellent results. Our
advice for donors guides them on how to ensure their money
has high impact. In all of this, we focus on the long-term
benefits for the people that the charities serve.
New Philanthropy Capital
3 Downstream 1 London Bridge London SE1 9BG
t: +44 (0)20 7785 6300 f: +44 (0)20 7785 6302
w: www.philanthropycapital.org e: [email protected]
A company limited by guarantee Registered in England and Wales
Registered charity number 1091450
Published by New Philanthropy Capital All rights reserved
ISBN 0-9548836-3-2
Designed by Falconbury Ltd
Printed by HenDi Systems